“She wasn’t a burden, she was my kid, and I’d do it all again.”

Ekiko “Yesenia” Aiken’s pregnancy with her daughter, Davina, was smooth and without complications. But when Davina had a seizure immediately after birth, a flurry of diagnostic tests followed.

As different diagnoses came back, Yesenia said she became a “fast advocate.”

“Her original prognosis was 30 days, and we took her home on a hospice plan… they were pretty much like, ‘Take her home, love on her and maximize the time you have with her,’” Yesenia recalled.

“From the moment she was born, everything that they gave me as far as diagnoses, I came back with, ‘Well, that’s not the final or definitive answer to what that means for her life.’ So, I advocated right away.”

Once home, Yesenia continued to relentlessly advocate for Davina and find a way to meet her medical needs while ensuring the best quality of life.

“It was just finding a way when no one was giving me any options – pressing them and finding a way. That became essentially the way we did things for the next 16 years. That’s how she made it to 16 years,” Yesenia said.

When Davina passed away at 16 in December 2022, Yesenia’s advocacy didn’t stop. She wanted to use what she learned to help other families.

One way Yesenia continues her advocacy is through our Family Advisory Council (FAC). Yesenia joined the council as a bereaved parent member in 2023.

“It really helped me to sort of pick that baton back up and feel connected to Davina and feel like that energy and drive and momentum could benefit someone else other than just our family,” Yesenia said.

“We were the perfect fit.”

Davina was born in Georgia and eventually diagnosed with Aicardi syndrome, a rare genetic disorder that affects the brain and eyes as well as other parts of the body. It caused seizures, vision problems, spinal defects and other developmental delays.

When Davina was young, Yesenia became a single parent. There were multiple hospitalizations and surgeries to repair Davina’s scoliosis. Yesenia also worked to find the proper medications to manage Davina’s seizures and a nutrition plan to help Davina gain weight.

Yesenia began her bachelor’s degree studies as a psychology major and completed her degree in English – creative writing. She credits those early studies as formative in her knowledge of the brain and understanding that “malformation doesn’t determine what type of malfunctions happen.”

Therefore, as she learned of Davina’s impairments, Yesenia was determined to see how Davina would actually develop before assuming what her daughter was capable of.

Yesenia said she was never afraid to ask questions and consider all options. Ultimately, she would make decisions that fit Davina’s and her lifestyle.

“I would always inquire about everything and get as much information as I could get, but then I would narrow it down to what’s important to us, what maintains Davina’s quality of life, and what keeps her happy while maintaining my sanity, and not feeling guilty for that balance,” she said.

Davina developed a passion for music, with a special love for classical and jazz. She also was a social butterfly with other kids and always ready for an adventure.

“She was a very comforting spirit and was very calming and soothing to be around,” Yesenia said. “We were the perfect fit… she was the biggest blessing, and I enjoyed being there for her. I enjoyed all the care and the challenges, too. She wasn’t a burden, she was my kid, and I’d do it all again.”

When Davina was 11, Yesenia decided to move back to her native Evanston so they could be closer to family and give Davina more educational opportunities.

After the move, Yesenia learned about DSCC from other families she met through their Aicardi syndrome connection.

Davina thrived at school in Evanston, but finding available at-home nursing was challenging. Yesenia worked closely with her DSCC Care Coordinators to try to find the right services for Davina’s level of care.

When the pandemic hit in 2020, the change in school and therapy routines affected Davina’s overall health. Yesenia said her DSCC Care Coordinator at the time worked hard to help the family try to bridge the gaps.

“A lifeline”

After Davina passed away, her Care Coordinator asked Yesenia if she would consider joining DSCC’s Family Advisory Council whenever she felt ready.

“I was really grateful that she presented it and was very respectful with how she presented it. She phrased it as, ‘I don’t want you to feel overwhelmed or burdened and don’t feel any obligation, but I really think this would be a good place for you to help continue to advocate,’” Yesenia said.

“Honestly, for me, (the FAC) was kind of like a lifeline. In that moment when you’re going through so much and there’s so much going on around and the grief has not quite settled in, it’s kind of like a line that keeps you connected.”

When Yesenia attended her first meeting, she was immediately impressed by the other parents’ passion, knowledge and diverse backgrounds.

“Everyone brings something different to the table, but the fact there are several parents who have taken on full-time jobs in respective organizations and brought what they get from those organizations to the table. It was really impressive to see parents being so involved,” she said.

A future in advocacy

As an FAC member, Yesenia said she’s excited to contribute to its newly formed transportation committee, which is looking at the challenges families face in transporting their children to medical appointments, hospitals, therapies, etc., all over Illinois.

Yesenia said it’s refreshing to meet and know other families who are fighting just as hard for their kids. She also explained that her connection to other families and the world of caregiving is still vitally important to her identity after losing Davina.

Yesenia also wants to honor and continue sharing what Davina taught her throughout her 16 years.

“It wasn’t for me to go through, get through and then leave it alone once it was done,” Yesenia explained.

“She basically gave me a foundation for a future in advocacy, and she was essentially sort of the fuel to say, ‘This is not where it stops. You’ve gained so much in this experience; move forward with what you have, and don’t leave it alone.’

So that’s what I’m trying to do now. I’m trying to make sense of the journey and all of the struggles and use those experiences to move me forward and to help others move forward.”

“We need to have our voices heard”

In April of 2020, Jaclyn Vasquez was a busy mom of two little boys in her 40s. She soon found out she was pregnant with identical twin girls.

It was a hard, high-risk pregnancy made even more difficult by the isolation, health risks and unknowns of the COVID-19 pandemic.

With an extensive professional background in early childhood development, Jaclyn successfully advocated for her own health and for her twins to stay in the womb as long as possible.

Jaclyn delivered Ava and Olivia at 27 weeks and five days. She suddenly became the mother of “micro-preemies” fighting for their lives. It was the beginning of a rollercoaster journey that led her to DSCC and our Family Advisory Council.

Jaclyn and her husband juggled caring for their two boys at home and being in the neonatal intensive care unit (NICU) with their daughters.

Olivia spent 100 days in the NICU. Ava struggled more with severe lung damage due to her prematurity.

Ava transitioned to Ann and Robert H. Lurie Children’s Hospital in Chicago. She received a tracheostomy tube (trach) and gastrostomy tube (g-tube) just before she turned 4 months old. Ava spent a total of 586 days – 19 months – in the hospital before she was stable and strong enough to come home.

Ava immediately enrolled in the Home Care Program, which DSCC runs on behalf of the Illinois Department of Healthcare and Family Services.

Jaclyn and her family then began to experience the systems and challenges involved with caring for a child who is medically complex at home. These challenges include a shortage of qualified nurses to provide in-home care and a lack of community awareness across the board about what children like Ava need.

“This a population where we’re so overwhelmed and there’s so much going on and there’s so much scary, and not many people know about us or how to support us, even society in general,” Jaclyn said.

Jaclyn soon found DSCC’s Family Advisory Council (FAC) and wanted to learn more.

“We talk about the typically developing child and there’s so much conversation about the village that raises the child. If you need a whole village to raise a typically developing child, what are we doing for those that need additional support, especially in children like ours that are technologically dependent?” Jaclyn said.

“I saw the FAC as a platform specifically for our population to continue to elevate our voice and understand what’s going on in the state, where we can continue to advocate and promote policy changes and also as another way to build community,” Jaclyn said. “Especially during COVID when the girls were born. I didn’t get to meet other families who were experiencing something similar or had older children who went through it who I could learn from. I just felt it was a good place to be.”

Jaclyn joined the council and is now able to share both her experience as a parent and caregiver as well as her professional expertise. She is a former early childhood special education bilingual educator and administrator for the Child Parent Centers across Chicago Public Schools. She also served as the co-director of Policy and Leadership at the Erikson Institute.

Jaclyn now cares for Ava, 4, full-time and runs her own consulting company focused on early childhood development, community systems and policy.

“I understand where these are possibilities of intersection to create space for information, awareness, center family voices in the conversation but also raise those voices to other tables and where we need to have our voices heard,” she said.

Jaclyn says she also appreciates how the FAC is a committee that is responsive to its members.

In the fall of 2023, she volunteered to join Erica Stearns as the FAC’s co-chair. In her new leadership role, she hopes to look at ways to use both data and family voices to make meaningful differences in real time.

“It really is a great space for us to connect with others and not feel so alone on our path to support our own children,” Jaclyn said.

“I also think it’s a great place to learn about what else is happening across our state that could be A., either a possible resource, or B., where we can continue to elevate our voice to create changes not just for our own children but for other children as this population is growing.”

“As a parent, we can feel so overwhelmed. Even if help is right there, that reach can be hard to do.”

Daniel Barraza, 17, and his big sister, Diana, 22, were born with the same rare condition. Yet, it took many years before their family knew their true diagnosis.

Doctors first thought the siblings had cerebral palsy with hypotonia and seizure disorders. Hypotonia means decreased muscle tone, so Daniel and Diana have a hard time sitting up, holding their head and body upright, and so on.

Both siblings enrolled with the Division of Specialized Care for Children (DSCC) shortly after they were born. (Diana recently aged out of DSCC’s Core Program after turning 22.)

In 2017, genetic testing revealed they both have a rare gene mutation called GPAA1. The Barrazas first knew of only a handful of families living with this syndrome worldwide, their mom, Anita said. They’ve learned of a few more families affected by GPAA1 since then.

The official diagnosis was initially difficult for Anita.

“It caused a lot of mixed emotions,” she said. “It was another phase of the grieving process you go through as a parent and a reminder of what’s wrong.”

Now, she focuses on her children’s abilities and helping them have the best quality of life possible.

She is thankful for the support DSCC provides to help maximize her children’s strengths, navigate their needs and connect with resources as they grow.

“(DSCC Care Coordinator) Ariel is wonderful. She’s very understanding and good about following up and helping provide financial support,” Anita said.

“DSCC, The Arc of Illinois and DRS (Division of Rehabilitation Services) have been wonderful for our family.”

“Engaging them is what matters”

The Barrazas prioritize being active. They enjoy camping together and have traveled to Yellowstone, Mount Rushmore, Starved Rock and more.

The family is always on the lookout for accessible sites for Daniel and Diana’s wheelchairs. The siblings have also participated in the Special Olympics Illinois Summer Games.

“Seeing them active and engaging them is what matters to me most,” Anita said.

The family also wants to empower Daniel and Diana to be as independent as possible. They also want to help others understand their abilities.

Anita likes to make videos showing Daniel and Diana doing a variety of activities, such as preparing food, doing chores, playing sports and having fun outdoors.

“Since my children are non-verbal, this is a good way for people to know what they are capable of doing,” she said. “I encourage other parents to make them!”

Anita shares these videos with teachers, camp counselors, recreational program staff and more.

“A lot of times, we focus on the ‘cannot do’ and it limits our ability to see what they can do,” she said.

You can watch these videos below:

 

“Education empowers me”

As an occupational therapist who works with schoolchildren, Anita understands both sides of the need for information and resources when supporting young adults with disabilities.

“As a parent, we can feel so overwhelmed. Even if help is right there, that reach can be hard to do,” she said.

Anita was grateful DSCC arranged for her family to attend the Illinois Statewide Transition Conference together. The conference helps families and professionals learn about the resources, information and opportunities available for youth with disabilities as they prepare for adulthood.

DSCC covered all the related conference costs. The conference was a valuable networking opportunity for the Barrazas.

“These types of resources educate me on how to best provide for my children’s needs and for their future,” Anita said.

Both Daniel and Diana are unable to safely live on their own due to their significant medical needs.

Anita says it’s hard to think about, but she realizes she must start planning for who can care for them when she and her husband can no longer do it. Residential placement may be necessary in the future.

She appreciates DSCC’s role in helping families prepare and outline goals for their child’s future. Families can never have enough information and resources, Anita said.

“Education empowers me to be better prepared to help (Diana and Daniel) have a good quality of life.”

“It takes a village, and you need to find your village.”

Rachel Singleton has faced many frightening unknowns throughout her daughter Eloise’s life.

At 20 weeks pregnant, Rachel learned Eloise has a rare brain malformation called alobar holoprosencephaly. The condition causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).

At first, Rachel and her husband, Zach, didn’t know if Eloise would survive birth. Once Eloise was born in November 2019, they didn’t know how long she would live. Her life expectancy was six months or less.

The new parents also didn’t know how much they would gain. Understanding doctors. The generosity of family and friends. And caring professionals from the Division of Specialized Care for Children (DSCC).

Rachel credits this support team with helping Eloise and her family reach her 3rd birthday.

“This has been three years we didn’t know that we would get,” Rachel said. “I’m grateful for the team that we have surrounding us… How else would we have gotten here?”

Help from a “jack-of-all-trades”

Immediately after her birth, Eloise spent 20 days in the neonatal intensive care unit at OSF Children’s Hospital of Illinois. She then went home to hospice care just before the COVID-19 pandemic hit.

Early on, her family contacted DSCC. Care Coordinator Haley Shropshire helped them navigate many new and unfamiliar challenges.

“That first year we learned to do a lot on our own but when we needed additional nursing help, Haley and the team at DSCC helped us sort through insurance and get Eloise’s needs met,” Rachel said. “Haley is a jack-of-all-trades, and we’re so thankful for all that she does.”

Eloise has since moved from hospice to palliative care and continues to defy the odds.

Her middle name is Joy and that’s exactly what she brings to all who meet her, Rachel said.

“She has the biggest smile and hair that can’t be tamed. She’s a charming warrior – feisty, sweet and sassy.”

The family was overjoyed to celebrate Eloise’s third birthday. They used the occasion to give back to OSF Children’s Hospital with a donation of sound machines and other special treats and gifts for the hospital’s patients and staff.

“The party was a way to give back and celebrate something we never dreamed possible,” Rachel said.

“It takes a village”

Along with the joy, there are still immense challenges in caring for Eloise’s complex medical needs.

“You can feel like you’re drowning. Some days it feels impossible,” Rachel said. “It takes a village, and you need to find your village.”

Rachel is thankful to have Haley and DSCC as part of her village.

If a need comes up, “she’s the first person I go to, and I can count on her to look into something,” Rachel said, whether it’s glasses for Eloise, new equipment or an insurance question.

“So far, there’s no question that she hasn’t been able to answer,” she said.

Rachel also appreciates how Haley takes the time to really talk with her during their monthly check-in calls.

“I get so many calls for Eloise, and I have to go through things as quickly as possible. With Haley’s calls, there’s time to chat. I don’t have to just run through everything,” she said.

Eloise now has an Individualized Education Program (IEP) and may start preschool soon.

Rachel also started a blog called Eloise’s Mom to help other medical moms and families feel less alone. She also hopes to educate others about the grief and happiness that come with raising a child with medical complexity.

“The ‘loss of normal parenthood’ has taken on different meanings over time,” Rachel wrote in one post. “I no longer grieve experiences. I have sort of allowed myself to dream again. But the anticipatory grief lingers. And that’s okay.”

You can read more about Rachel and Eloise’s powerful story at https://eloisesmom.com/.

“The tunnel can be very long, but there’s light at the end of it.”

Dominic’s mom, Aurea, felt like she lived at the hospital during the first years of her son’s life.

“Everybody joked that I was an honorary staff member,” she recalled of the many and long hospital stays.

Dominic, now 7, was born with a large omphalocele. Omphalocele is a rare condition at birth that affects the abdominal (belly) wall. It caused his intestines, liver and bowels to stick outside of his belly in a sac through his belly button.

Aurea said the omphalocele’s size prevented his lungs and chest wall from fully developing.

“Initially, he didn’t really need that much respiratory support. But as he started growing, he needed more oxygen,” she said.

Dominic soon got sick with pneumonia and was placed on a ventilator. He was able to get off the vent, but his chest wall was too small to support his breathing needs.

“They did a chest surgery when he was 6 months old. They cut his ribs to give his lungs a chance to grow and give more respiratory capacity,” Aurea said. “(His condition) has not been a linear thing. It’s definitely a little up, a little down. It’s all trying to figure out what works best.”

Through the highs and lows, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) has helped Aurea and her family navigate Dominic’s changing needs over the last seven years.

“It’s been a pretty easy program to work with,” Aurea said. “All of my case managers have been extremely helpful.”

Dominic and his family receive in-home nursing through the Home Care Program. DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS).

Dominic has a tracheostomy and a vent. His home must meet certain requirements to support his ventilation equipment.

Aurea said Dominic was in the hospital so long that her family didn’t renew the lease on their home and stayed with her parents. When preparing for Dominic to leave the hospital, they had to find a house with grounded outlets.

A friend of Aurea’s family is an electrician and was able to ground their home’s outlets before Dominic arrived home. Dominic’s DSCC Care Coordinator at the time helped their family with the necessary paperwork to pay for the electric work and complete the home inspection.

Once Dominic was home, Aurea grew frustrated with Domonic’s local care. Dominic’s Care Coordinator helped her find pulmonologists used by other DSCC participant families and move Dominic’s pulmonary care to Ann and Robert H. Lurie Children’s Hospital.

“That was really helpful and made it very easy to switch,” Aurea said.

Dominic’s current Care Coordinator, Julie Gosnell, is now working with Aurea to find a cart that can easily carry his vent beside him while he’s on the go outdoors.

“He’s very active. He runs up and down the hallway all of the time, jumps on the bed, jumps on the couch. He loves jumping on whatever he can jump on,” Aurea said. “He just loves to climb on things. I tell people he’s a regular little boy, he just has extra tubes.”

Julie has helped Aurea apply for the Health Insurance Premium Payment (HIPP) Program and compile Dominic’s medical records to share when seeking a second opinion.

Aurea also partners with Julie to focus on goals for Dominic and his future.

“My ultimate goal is for him to be done with all of those machines – no oxygen, no trach, no g-tube (gastrostomy tube). But I realize that goal to ultimately get him off machines is not a goal that I can attain. I can’t do anything to make that happen,” Aurea said.

“I can make sure that I am on top of his medical care and making sure he gets what he needs, whether that’s joining Facebook groups or Google searching or finding things out about different techniques… I want to do what I can to improve Dominic’s quality of life.”

Although she is an independent person, Aurea said she appreciates having a team to contact when problems occur, she has a question or she just feels overwhelmed.

“It’s nice to have someone follow up with me consistently,” she said. “It’s nice to speak with Julie, and she can give me ideas for doing something differently.”

Aurea has also joined DSCC’s Family Advisory Council (FAC).

“I’ve always felt with this journey in general is if I can to anything to help somebody else along the way, I’m going to do that, whether it’s having a conversation or sharing some of the hiccups in a program I’ve seen,” she said.

Aurea recommends that families of children with medical complexity focus on what they can control and celebrate the small victories.

“There is light at the end of the tunnel. The tunnel can be very long, but there’s light at the end of it,” she said.

“Don’t be afraid to take advantage of the resources and supports that are out there”

Willa is a 4-year-old “tiny tornado” with an iron will, her family says.

This strong will earned her the nickname “Wonder Willa.” It also keeps her family entertained and hopeful through the uncertainty of her rare medical condition.

Willa was born with Congenital Central Hypoventilation Syndrome (CCHS), a lifelong and life-threatening genetic disorder that affects her breathing and nervous system.

Willa’s mom, Whitney, said there are only about 1,400 to 1,500 people in the world with a CCHS diagnosis.

“No single person with CCHS presents the same way,” she said. “So, it’s really hard to come up with a plan of care.”

Whitney is grateful for Willa’s amazing medical team and the support of the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) to help Willa continue to grow and thrive amid the unknowns.

A tough pill to swallow

Being born prematurely is often not ideal. But Willa’s arrival six weeks early turned out to be a blessing, Whitney said.

When Willa was born, her family and doctors did not know she had CCHS. They simply wanted to monitor her still-developing lungs.

“In most cases of her condition, it doesn’t present itself right away so we were lucky that she was early because she didn’t really start showing danger signs until 3 days old,” Whitney said.

“For Willa, her respiratory tract is only impacted by her condition when she’s sleeping. When she’s awake, she breathes just like you and I do. But once she falls asleep, her brain doesn’t tell her body to breathe. It doesn’t register the CO2 changes and she goes into CO2 narcosis. Her organs then shut down to protect her from that buildup of CO2 in her body.”

Three days after birth, Willa went into CO2 narcosis. Fortunately, doctors made the call to quickly transfer her to Cardinal Glennon Hospital in St. Louis before irreversible damage occurred.

A month later, genetic tests confirmed her CCHS diagnosis.

“Once we got the official diagnosis, we focused on what does treatment look like and how do we ensure she has the best life she can have,” Whitney said.

Willa’s medical team soon recommended placing a tracheostomy in Willa’s neck so she can breathe through a mechanical ventilator while she sleeps.

“It was not an easy pill for my husband or me to swallow when the pulmonary team wanted to put a trach in,” Whitney recalled. “But it was what needed to be done to keep her healthy and safe.”

“I’m not alone”

Willa received her trach at 2 months old. She arrived home more than two months later and has received in-home nursing through the Home Care Program ever since.

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services (HFS). The program provides in-home nursing and other support to help families safely care for their children with complex medical needs.

Whitney said the in-home nursing support is invaluable.

Willa’s nervous system can’t regulate, so if she’s playing hard or gets overexcited, her body won’t tell her to breathe. Therefore, Willa needs constant monitoring.

“But if you didn’t know about her condition, you’d have no idea that there’s anything going on with her except for the fact she has a trach,” Whitney said. “She is just your normal, crazy 4-and-a-half-year-old. She is a tiny tornado who loves to terrorize her older sister.”

As Willa grows, Whitney remains a strong advocate not only for her daughter but also for other families of children with special healthcare needs.

She joined DSCC’s Family Advisory Council (FAC) in 2021 and soon volunteered to serve as its advocacy chair.

Whitney appreciates the opportunity to connect with other families and share what she’s learned.

“It’s been an incredibly positive experience working with (DSCC), and I’ve gained even more of an understanding that I’m not alone. Being a medical mom and a medical parent is often very isolating. My husband and I know what each other is going through and what we face on a daily basis (with their daughters) but our friends or outside people don’t really get it,” she said. “(The council) has opened my circle.”

Improving services for families

Whitney is also passionate about helping improve how the Home Care Program serves families. In particular, she wants to help families better understand the process for how HFS assigns in-home nursing allocations for each Home Care participant.

She also wants to help HFS understand the unique needs and circumstances of families like hers when deciding nursing allocations.

As part of her FAC service, Whitey hopes to speak with families across the state to learn about their experiences with nursing allocations and the appeal process.

“I want to hear their experiences so I can make a more well-rounded recommendation for changes,” she said.

Illinois families can email Whitney directly with feedback at w.woodring25@gmail.com.

Whitney also wants to use her role with DSCC’s FAC to educate families about existing resources and encourage them to use them.

“There can be a stigma associated with accepting help but don’t be afraid to take advantage of the resources and supports that are out there,” she said.

Visit our Family Advisory Council page to learn more about the FAC and how to get involved.

“DSCC has played a tremendous role in helping our family to thrive”

Before Erica Stearns became the proud mother of two children with complex medical needs, she grew up with disabilities herself.

Erica was born with non-isolated tracheoesophageal fistula (also called TE fistula), as well as esophageal atresia, which resulted in permanent vocal cord paralysis. These conditions made her unable to breathe on her own or speak for the first part of her life.

Throughout her early childhood, Erica needed a gastrostomy tube (g-tube) to eat. She also depended on a tracheostomy tube (trach) to breathe until she was a teenager.

Erica unexpectedly found herself on the other side of complex caregiving when her daughter and son were born with a rare disease. Her children now depend on the same life-saving technology she needed as a child.

Though this world was familiar to Erica, there were still many unknowns, fears and intense emotions as she became both a mom and caregiver for her children’s profound disabilities and medical needs.

With support from the Division of Specialized Care for Children (DSCC) and finding community with other caregivers, Erica has developed a strong sense of purpose and empowerment.

She is the co-chair of DSCC’s Family Advisory Council. She is also DSCC’s new Home Care Family Outreach Associate.

In these roles, Erica uses her lived experiences to connect with other families and caregivers, raise awareness of their needs and find solutions to their challenges. These efforts are helping improve the quality of life for both her own children and all Illinois youth with complex medical needs and their families.

“Helping us to navigate our new lives”

Erica’s children Margot, 7, and Caratacus, 5, were both born with the same rare genetic mutation, lanosterol synthase (LSS), which causes congenital atrichia (alopecia), brain abnormalities, and profound intellectual and physical disabilities.

Erica and her husband were not prepared for either diagnosis.

“I felt like an outsider, unable to experience the ‘texbook’ parenthood that I had imagined. Even though the medical professionals referred to me as ‘mama’ and reassured me of my expertise on my child, I was overwhelmed by a creeping uncertainty, a gnawing doubt that I might never get to bring our child home with us,” Erica wrote about Margot’s birth and the days that followed.

“My journey was that of a medically complex caregiver, an advocate, a defender, a protector, and, above all else, a very tired mother. Becoming a caregiver to not one, but eventually two children with a rare and medically complex disease, meant that I had to quickly navigate the overwhelming world of medicine, genetic research, advocacy, and all the acronyms that come with this lifestyle.”

Margot and Caratacus both need in-home nursing to safely live at home. They became enrolled in the Home Care Program shortly after birth.

DSCC operates the Home Care Program on behalf of the Illinois Department of Healthcare and Family Services.

“DSCC was one of the first organizations to step into our lives. They were some of the first social workers who came into our home and began helping us to navigate our new lives with a medically complex child,” Erica said.

This support included connecting the Stearns family with available services and benefits to meet Margot and Caratacus’ complex needs.

Margot and Caratacus both qualify for the Home and Community-Based Services Waiver for Those Who are Medically Fragile and Technology-Dependent (MFTD).

Their DSCC Care Coordinator helped the Stearns family use the MFTD waiver to pay for modifications to make their van accessible for Margot and Caratacus’ wheelchairs and equipment.

The van modification helped the Stearns family take their first family road trip to Kansas to visit family over the summer of 2023. They also got to enjoy an adventure to the Kansas City Aquarium with their medically complex friends and the spending time University of Kansas natural history museum with their cousins.

“DSCC has played a tremendous role in helping our family not just to survive, but to thrive! They helped to provide the means for us to care for our children at home rather than in a hospital or an institution and they have supported us emotionally throughout every step of this journey,” Erica said.

“They are the people who we can guarantee to check in on us regularly, understand our children’s history, tell us about a resource or a charity that might benefit our children, and follow up with us following important events. Our Care Coordinator goes above by sending birthday cards to each of the kids, which I just can’t express it enough how touching and heartwarming that singular gesture is. She is the only person to ever do that for our kids.”

“A safe space” for concerns and input

In 2021, Erica became involved with DSCC’s Family Advisory Council (FAC). The council connects families to resources and provides guidance to strengthen DSCC’s teamwork, improve communication and empower families to have a voice in their child’s care.

Erica soon volunteered to chair the council and now serves as co-chair. She said she enjoys the unique opportunity to learn about and discuss current initiatives related to supporting families of children with special healthcare needs.

“All too often, families like our own feel as though many decisions are made without our knowledge or input, which ultimately impacts our children and our family as a whole. The DSCC Family Advisory Council is a safe space where our concerns and our input are not only valued and requested but also received with respect and genuine consideration,” she said.

Erica also appreciates the opportunity to network with other families from across the state and partner with professionals as well. This collaboration helps lead to supportive solutions for families throughout Illinois.

“It brings me immense comfort to know, and be a part of, a team of people who place the family perspective at the center of their discussions and decisions,” she said.

Home Care Family Outreach Associate Role

In 2023, Erica began to work for DSCC as our first Home Care Family Outreach Associate.

In this role, Erica works side-by-side with Home Care Program families and caregivers. She provides support by acknowledging shared experiences and helps guide them through the complex systems involved in their child’s care.

Erica also works to create a sense of community for caregivers within DSCC where families feel supported and empowered to navigate caregiving confidently.

“Empowered caregivers, in turn, create a positive ripple effect within their families and their communities,” Erica said.

Visit our Home Care Family Outreach page to learn more about this important role.

Learn more about Erica and her family

Erica is also the co-creator, host and author at Caffeinated Caregivers. You can read more about her parenthood and caregiving journey in this powerful blog post, “From Battlegrounds to Bridges: My Journey as a Medically Complex Caregiver.”

Erica also started a podcast called “Atypical Truth.” The podcast focuses on issues affecting caregivers, individuals with disabilities and individuals with complex medical conditions. One podcast episode highlights DSCC Care Coordinator Amanda Kaufman, who previously worked closely with the Stearns family.

“We’re grateful for DSCC’s help. They’ve always been there for us.”

Collin Monical was born with abnormalities of the hips, feet and legs, including a dislocated hip.

A surgery to relocate his hip led to a severe infection that further damaged his ball-and-socket joint.

Collin experienced developmental delays and numerous hurdles but grew up determined to be considered a typical kid.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) helped Collin and his family get the right equipment for his developing mobility needs as he grew. His DSCC care coordination team also provided guidance and resources to help Collin and the Monicals navigate each transition of Collin’s life.

Now 21, Collin is happily employed and ready to take on adulthood with the same determination he showed throughout childhood.

Collin’s parents, Greg and Christine, appreciate DSCC for supporting Collin and helping him fulfill these goals.

“We’re grateful for DSCC’s help. They’ve always been there for us,” said Greg.

“Incredible from the start”

The Monicals first relied on DSCC for help with obtaining Collin’s orthotics. Orthotics are braces that allow additional stability while standing and walking.

As Collin grew, he would need new orthotics to replace the old ones. The Monicals say DSCC was helpful each time.

“When he was just a toddler, DSCC helped us get a platform lift that made it possible for him to be at the table with us in an upright position. It made such a difference,” Greg said.

Christine agreed. “The Division of Specialized Care for Children has been incredible since the start,” she said.

From addressing Collin’s medical and educational needs to later fostering his independence and employment goals, DSCC has played an important role in Collin’s journey.

Kristin Lenover is Collin’s current DSCC Care Coordinator. “I have helped with things such as resolving a medical bill issue to walking through what they want the next steps of their lives to look like,” Kristin said. “I provide resources to help families and their children navigate private and public benefits, college scholarships, obtaining medical equipment and even tax preparation.”

Strength in helping others

DSCC covered the costs for the Monicals to attend the Illinois Statewide Transition Conference together in 2019. DSCC helps sponsor and plan the conference, which highlights the opportunities and resources available for youth as they prepare for adulthood.

Collin and his parents benefited from the range of conference session topics, including government benefits, education supports, the financial aspects of transition planning and self-advocacy.

One especially impactful conference session for Collin focused on matching an employee’s strengths to the employer’s needs.

Collin’s strength is interacting with others, which he’s proudly shown in each of his jobs to date.

“My first job in high school was the electronics department of a major national chain. I grew to be very knowledgeable about cell phones and many other products,” Collin said. “Dad would often have co-workers approach him saying, ‘Yeah, I was out at Walmart and met a very nice young man.’ Dad would encourage them to elaborate.”

After almost two years at Walmart, Collin began work at Taco Bell. He also upgraded from a Rollator walker to an upright style.

“I had some of my regular customers let me know that I was looking better.” Collin said of his posture. “This made me stand even taller. People ask me about an upright walker, and I highly recommend one.”

Collin eventually left Taco Bell to work at Wally’s Travel Center, where he continues to work today.

“The place is really big and always busy! There are 76 fuel pumps, electric charging stations, food and merchandise. We see lots of truckers, businessmen and families coming in with questions or needing help to find stuff,” he said.

Collin rings up purchases and helps customers find what they need.

“I often work a 10-hour day. I really enjoy it and don’t shy away from picking up extra hours,” he said. “I’m most content during my day when I’m making others happy.”

“Move forward with confidence”

Kristin is happy to see Collin pinpoint his strengths and use them in the transition to adulthood.

“Helping individuals move forward with confidence when they turn 21 is so important,” she explained. “It’s important for Collin to be able to navigate and better understand things like insurance and benefits, financial planning, taxes and moving from pediatric specialists to adult care.”

Now that Collin is 21, he is ready to age out of DSCC’s Core Program. It’s a milestone that Collin, his parents, and Kristin have worked together to achieve.

Collin said he is truly happy as he starts this new chapter. He looks forward to helping more Wally’s customers with a kind attitude and big smile.

“Always remember, ‘You may be the best part of someone else’s day,’” Collin said.

“DSCC has been there through all of it”

Watching your child take their first steps is an emotional moment for any parent.

For Brad and Amy Miller, the milestone represented all the obstacles their son Ryker has overcome in his short life.

Ryker, age 6, was born with spina bifida and a structural defect in his brain called Chiari malformation. He’s had 11 surgeries, a tracheostomy, a gastrostomy tube and many hospitalizations.

In May 2020, Ryker took his first steps without assistance.

“It was very emotional and basically a long-time coming,” Brad said. “We are well aware of other kids with spina bifida who will never walk, never take a step, even with a walker.”

Ryker’s mom, Amy, captured the moment on video (see below).

“It might look like nothing to most, but for Ryker and children with spina bifida, this is huge,” Brad said.

The Millers want to share Ryker’s journey to help educate others about spina bifida and provide hope for other families.

The diagnosis

Brad and Amy Miller had a 5-year-old daughter when they became pregnant with twin boys, Ryker and Carter. At the twins’ 26-week appointment, they learned Ryker had spina bifida.

“We didn’t know anything about it at the time,” Brad recalled. “We thought it was a death sentence.”

Spina bifida occurs when the spine and spinal cord don’t form properly. Ryker had the most severe type in which the spinal canal is open along the lower back, forming a sac. Additionally, Ryker had hydrocephalus, the buildup of fluid in the brain.

Ryker had surgery to close his spinal canal shortly after birth. He also had a shunt surgically inserted to drain the excess fluid from his brain.

Later, he started having difficulty breathing.

Ryker was transferred to St. Louis Children’s Hospital, where he was diagnosed with Chiari malformation. Chiari malformation is a condition in with brain tissue extends in the spinal canal.

Worried that Ryker would not be able to breathe on his own, doctors performed a tracheostomy.

Ryker also underwent a duraplasty. In this procedure, a surgeon opens the cover of the brain, called a dura, and sews a patch on it to make it bigger. This surgery relieves pressure on the brain.

“They did the surgery but were not optimistic it would help,” Brad recalled. “Lucky for us and for Ryker, it actually did help, and he started to breathe on his own again.”

“A saving grace”

Ryker spent the first three months of his life in the hospital, including 56 days in the pediatric intensive care unit at St. Louis Children’s.

The Millers struggled with how to balance staying with Ryker in the hospital while also caring for another newborn and a 5-year-old daughter at home.

During that time, Brad said the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) provided invaluable help.

DSCC covered the cost of the suggested donation for the entire Miller family to stay at the Ronald McDonald House during Ryker’s hospitalization at St. Louis Children’s.

“That was a saving grace for us, so we could actually be together at night as a family of four and spend every other waking minute at the hospital with Ryker,” Brad said. “I don’t know how we would have done it without that (assistance).”

DSCC continued to support the Millers as they navigated Ryker’s homecoming and learning his long-term care needs.

“He’s had a lot of follow-up appointments, and DSCC has been there through all of it,” Brad said.

Many of Ryker’s specialists are based outside of the Miller’s hometown, more than an hour’s drive away.

DSCC has helped arrange hotel stays if the family has an early appointment and has helped coordinate different providers’ schedules to find the best options for Ryker and the Millers.

“DSCC has been a saving grace in just the logistics of trying to do scheduling,” Brad said.

“There’s no mountain too high for him.”

With each passing year, Ryker continues to grow stronger. He is now in first grade.

In October of 2023, on a family outing to Giant City State Park, Ryker accomplished a new feat. He went rock climbing.

“We didn’t think Ryker was going to take off, but we didn’t want to stop him. He proved us wrong like he has done so many times,” Brad said.

Ryker’s twin brother and older sister also climbed the rock and knew what an accomplishment this was for their brother. “Ryker’s siblings were happy to see him up there. They were proud, they were excited. They climbed it, they knew it wasn’t easy,” Brad said.

Brad and Amy once again captured this milestone on video (see below) .

The climbing video was featured on the family’s Facebook page, Ryker Miller’s Journey. The page provides regular updates about Ryker’s medical procedures and overall life with spina bifida.

Brad wants parents to know that spina bifida is manageable and not the “death sentence” he and Amy initially feared.

“He can do a ton of things. He’s always smiling, and he will melt your heart,” Brad said. “There’s no mountain too high for him.”

Going forward, Brad said he and Amy want to do whatever they can to help support Ryker’s independence.

“We are so proud of him. For those first three months (of Ryker’s life), it was a blur. I honestly don’t know how we survived it, but we did. It’s made us stronger as a family and as individuals,” Brad said.

“We want to thank everyone at DSCC and give a big shout-out to Ryker’s entire medical team, from the doctors, nurses and therapists. We are lucky to have an amazing team on Ryker’s side.”