Fowler Bonan Foundation, a southern Illinois nonprofit, worked with DSCC’s Marion Regional Office to provide shoes and clothing for participant Renesmae and her two younger siblings

Renesmae is an outgoing 5-year-old who loves unicorns. She recently started kindergarten with extra sass and confidence thanks to new unicorn outfits and orthotic shoes for the school year.

Renesmae and her two younger siblings received a free back-to-school shopping spree for these much-needed items and more from the Fowler Bonan Foundation.

Renesmae’s care coordination team from the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) partnered with the foundation to make the special shopping trip possible,

“There’s a lot going on. With the kids starting school, we just didn’t know what we were going to do,” her mother, Misty, said during the shopping trip.

“Everyone at DSCC is really nice. They help with rides to the doctors and other things, but we never expected this. I can’t believe we’re shopping! It’s just above and beyond.”

A family in need

Renesmae has been a DSCC participant for most of her life.

“She had viral meningitis and severe seizures when she was 2 months old,” Misty said. “She has partial paralysis on her right side, can’t open her right hand on command or raise that arm very high, and limps or drags her foot when she walks. Thankfully, she hasn’t had any seizures in a while.”

Renesmae also has hypertonia, which makes her muscles stiff and difficult to move, and homonymous hemianopsia, a condition that causes her to see only one side of the visual field of each eye.

Misty describes Renesmae as “outgoing and not one bit shy.”

“She’s my absolute handful and, like the country song says, can be ‘t-r-o-u-b-l-e,’” she said. “She’s also a great big sister and is always doing stuff for her little brothers. She’s such a mother hen to Liam and Aries.”

Liam is an infant, and Aries is 3. Aries is now starting Head Start, a program that promotes school readiness.

Renesmae’s DSCC care coordination team includes Care Coordinator Cheryl Golliher and Program Coordinator Assistant Renee Woodson. They partner with Renesmae’s family to find treatment options, transportation to appointments and other services to help Renesmae thrive.

“The family let me know they needed help getting her orthotic shoes,” Cheryl said. “Renesmae wants to be like every other kid. The shoes look like any other pair of shoes but are different sizes and fit her brace. The shoes are an important part of keeping her focused on positive things, not other distractions.”

As Cheryl and Renee looked for options for Renesmae’s footwear, they learned all three siblings needed new clothes and shoes for the school year.

A local nonprofit ready to help

Our DSCC care coordination teams can help our participant families find community funding opportunities and resources to meet these important needs.

Amy Jones, DSCC Regional Manager for our Olney and Marion offices, and her team contacted the Fowler Bonan Foundation to see if they could help Renesmae’s family. The foundation provides clothing and shoes to low-income children through their Clothes for Southern Illinois Kids initiative.

“They agreed to help buy clothes and shoes for all of the children and asked that we join their volunteers to help the family shop,” Amy said. “We contacted the family and worked with the foundation and our team to get everything set.”

Bobbie Fox is a Fowler Bonan board member who began volunteering with the organization nearly two decades ago.

“My family was new to the area, and I worked as a store manager. Back then I did all the shopping for our families on my lunch break,” Bobbie explained. “Now, more people know about us and that we offer help in 17 counties throughout southern Illinois. We work with local organizations, community businesses, teachers and others to fundraise and make sure that every bit goes out locally to reach our families and help kids.”

 Time to shop

Everyone met at Walmart in Anna on July 20 for the shopping trip. The group included Renesmae’s family – her parents, Misty and Jerry, and little brothers, Liam and Aries – and Bobbie from the foundation and her daughter, Saylor.

Cheryl and Renee were unable to attend. Their teammate Jimmy Baldi, a DSCC Program Coordinator Assistant from the Marion office, volunteered to join the group and help shop.

The first stop was the shoe department. Mom and dad located the right sizes, but the kids had a tough time deciding with so many options to choose from. Renesmae selected Minnie Mouse sandals. Aries went with the Batman sneakers.

“We want to be sure that the kids have shoes and other essentials, such as socks and underwear, in addition to everyday clothes,” Bobbie explained. “The foundation typically provides $100 to $150 for each child to cover these needs.”

A team effort and “win-win for all”

Everyone did their part to help Misty and Jerry feel comfortable and find items the kids needed.

The group took turns hunting for unicorns and superheroes (Aries’ favorite), suggesting styles and finding the right sizes.

Everyone’s efforts were worth it. At the checkout, the kids were happy campers and Misty couldn’t believe they each had five new outfits for school along with plenty of underwear and socks.

Jimmy even snuck in some baby time with Liam.

“I’m really amazed and just so thankful to the foundation and everyone,” Misty said. “These will be hidden away until school starts so that they don’t get messed up.”

As the shopping trip ended, Bobbie exchanged high fives with Renesmae and got a big hug from Aries.

“It’s such a joy to be able to do this,” Bobbie said. “The focus on the kids, partnering with other organizations and individuals. It’s a team effort and a win-win for all.”

The Fowler Bonan Foundation also ordered Renesmae’s orthotic shoes.  Jimmy later traveled to the foundation’s headquarters in Harrisburg to pick them up. Cheryl delivered the shoes to the family.

What started as a team effort, ended as a team effort.

“The Foundation is a great resource and so quick to respond to the needs of our families,” said Cheryl. “The shopping trip helped relieve so much stress and worry for the family. It was a great team effort in every sense of the word. I hated to miss the shopping trip, but Jimmy volunteered to go and really loved going.”

We’re thrilled our Marion Regional Office team and the Fowler Bonan Foundation came together to support Renesmae’s family. A big thank you to Fowler Bonan for providing the generous shopping spree!

If you would like to volunteer to help the foundation or know of a family or child in need, please contact them at FowlerBonanFoundation@gmail.com.

You can see more photos from the shopping trip on our Facebook page.

DSCC partners with state and federal agencies to ensure licensed caregivers can be paid nurses for their children beyond the public health emergency

The COVID-19 public health emergency has given families more flexibility to help care for their children with complex medical needs.

One helpful way is allowing parents and legally responsible adults (LRAs) who are licensed nurses to be paid caregivers.

The Division of Specialized Care for Children (DSCC) is working with our state and federal partners to make this a permanent option through the Medicaid Home and Community-Based Services Waiver for Medically Fragile, Technology Dependent (MFTD) Children.

The Illinois Department of Healthcare and Family Services (HFS) is the Medicaid agency responsible for the MFTD waiver. Many families in the Home Care Program have children who receive services through the MFTD waiver.

HFS must renew Illinois’ MFTD waiver every five years. The current waiver will expire on Aug. 31.

DSCC and HFS partnered to collect family input and propose several changes as part of this year’s renewal process. Our proposal included a request for nursing by licensed LRAs to be a permanent MFTD waiver service.

We understand this option is a much-needed benefit for our participant families.

The federal Centers for Medicare and Medicaid Services (CMS) reviewed our proposed changes as part of the waiver approval process.

CMS is now asking for more time to review our request for paid nursing by licensed LRAs. Therefore, nursing by licensed LRAs is currently not part of the approved waiver that will take effect on Sept. 1.

“CMS is aware of the strong advocacy and support of this service from waiver customers, families, UIC (the University of Illinois Chicago), DSCC, and HFS. It is their intention to support the State in this endeavor; however, their review will not be completed by the waiver expiration date,” according to an HFS notice to MFTD waiver families.

You can read the full notice about licensed LRAs and the waiver renewal on the HFS website.

In the meantime, nursing by licensed LRAs remains part of Appendix K. (Appendix K is an emergency coverage document for individuals receiving services through a Medicaid waiver.)

Licensed LRA nursing will therefore continue throughout the public health emergency and six months after it ends. (The public health emergency is currently set to end in October, but this date will likely be pushed back once more.) This option is available for all Home Care participants, including those who do not receive MFTD waiver benefits.

This timeframe will give CMS more time to review and work with DSCC and HFS to approve licensed LRA nursing as a permanent waiver service.

Families can see the approved waiver and review the changes taking effect on Sept. 1.

We will continue partnering with HFS and CMS to help meet our participants’ needs and resolve their concerns. We look forward to more progress in the coming months.

Please note this update about licensed parent caregivers is separate from DSCC and HFS’s other work to expand paid caregiving options for the Home Care Program as part of Illinois’ plans for an increased federal match (FMAP) from the American Rescue Plan Act (ARPA).

We remain committed to improving support for caregivers of children with medical complexity. We will share updates as available on this additional work.

UIUC’s School of Social Work recognized Amy Jones for her dedication and excellent learning experience for interns

Sruthi Thinakkal says her internship with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) shaped her as a social worker and taught her the meaning of true teamwork.

Amy Jones, Regional Manager of DSCC’s Olney and Marion regional offices, was an enthusiastic and motivating mentor throughout Sruthi’s experience.

Amy has now received the Outstanding Master of Social Work (MSW) Field Instructor Award for the summer 2021 semester. The honor is from the University of Illinois Champaign-Urbana’s (UIUC) School of Social Work.

“Receiving this award was such a nice surprise! I’m truly honored but never expected it,” Amy said.

The School of Social Work gives the award during each internship rotation to a field instructor who has provided exceptional teaching/mentoring for their MSW intern.

“Based on Sruthi’s nomination letter, it is apparent that (Amy is) dedicated to providing an excellent learning experience for the students, and the School of Social Work is very appreciative,” MSW Field Director Lindsey Trout said in an email announcing the award.

Sruthi nominated Amy for the award after spending two semesters with DSCC’s Marion and Olney offices in 2021. (You can read more about how Sruthi’s internship provided life-changing experiences and lessons.)

“It had been a little while since I’d submitted the nomination, and I’ve been so busy that I completely forgot,” Sruthi said. “It made me so happy! I could go on and on about how Amy shares information and is always willing to help others. It was such a nice surprise, but I just knew she would win!”

Sruthi now works in Chicago with the Rush Craniofacial Center team. She credits her internship with preparing her for a job she loves.

“I gained so many skills that have directly impacted my career,” Sruthi explained. “DSCC taught me so much about working in tune with families, the grief process, the importance of teamwork and listening, and how a monthly call can make such a difference in helping families feel supported and connected.”

Amy says interns aren’t the only ones who benefit.

“It’s a mix of seasoned and new that brings fresh ideas and different perspectives to the workplace,” Amy said. “It’s exciting to watch their growth and know that they’re building a ‘toolbox’ of skills that will serve them well as they move on in their careers. It’s equally rewarding learning from them along the way.”

The Olney and Marion regional offices have recently welcomed two new interns to their team.

“I’m looking forward to learning as much from them as they will from us,” Amy said. “I enjoy being able to talk about the world of social services and sharing about DSCC but It’s really a team effort. All of us work to partner with our families, to help them know about and connect with the services they need.”

Amy’s award has a place of honor in her office – and in her heart.

“The award isn’t just mine. It’s for all of us.”

Congratulations, Amy, on your well-deserved honor!

A new licensure process for nursing agencies will help provide more options for children and adults in need of in-home nursing care

The nationwide nursing shortage has affected many Illinois families in need of in-home shift nursing care for their children with complex medical needs.

There is a constant demand for more in-home nursing care options in all parts of the state, both rural and urban.

The University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) has partnered with the Illinois Department of Public Health (IDPH) to help meet this need and give families more nursing care options.

DSCC worked with IDPH to change how our enrolled nursing agencies are licensed to serve Illinois counties. Nursing agencies can now be licensed to serve all of Illinois instead of only individual counties.

This change should make it easier for nursing agencies to serve more parts of the state.

Before this change, nursing agencies could only operate within their approved service county area. Nursing agencies had to request approval for each county they wanted to serve.

This process made it difficult for nursing agencies to expand coverage to areas in need. Our participants who receive in-home shift nursing through the Home Care Program could only receive services from nursing agencies licensed for their specific county.

Now all nursing agencies who are licensed and enrolled with DSCC in good standing may serve all Home Care participants in any part of the state.

This broader statewide approach to nursing agency licenses will offer more available nursing options to our participant families.

Please note that each nursing agency must decide if it wants to expand its service area to other parts of the state. This decision is based on nursing staff availability.

We are thankful for IDPH’s partnership to help meet this important need for our participants and their families!

The deadline to share feedback is June 30.

Families have an opportunity to share feedback on proposed updates to the Medicaid Home and Community-Based Services Waiver for Medically Fragile, Technology Dependent (MFTD) Children.

The Illinois Department of Healthcare and Family Services (HFS) is the Medicaid agency responsible for the MFTD waiver. Many families in the Home Care Program have children who receive services through the MFTD waiver.

HFS must renew Illinois’ MFTD waiver every five years. HFS and the Division of Specialized Care for Children (DSCC) have partnered to make several changes as part of this year’s renewal process.

To review the full list of waiver updates, you can:

• See page 2 of the electronic copy of the proposed renewal application.
  
• Review a hard copy at HFS’ offices at:
  
  • 201 South Grand Ave. E.,
    Springfield, IL 62763
    
  • 401 S. Clinton
    Chicago, IL 60607

HFS now seeks public input on these changes. (You can read the public comment notice on the HFS website.)

The deadline to provide feedback is June 30.

You can share your feedback in two ways:

• Via email to HFS.HCBSWaiver@illinois.gov
• Via mail to the Illinois Department of Healthcare and Family Services, Attention: Waiver Operations Management, 201 South Grand Ave. E., 2FL, Springfield, IL 62763

HFS will send your comments to the federal Centers for Medicare and Medicaid Services as part of the waiver approval process.

If you have questions, please contact HFS’s Waiver Operations Management Unit at (217) 524-4148 or (844) 528-8444.

“The help DSCC provides is more important now than it’s ever been.”

Division of Specialized Care for Children (DSCC) Medical Advisory Board Chair Dr. Stephen Bash is a “Hoosier” born and raised.

He attended college and medical school at Indiana University. While doing his rotation at Riley Children’s Hospital in Indianapolis, he fell in love with pediatric cardiology.

“I had completed one year of training, but it takes two years to be board certified for pediatric cardiology,” Bash explained. “I had to make a decision to either continue my training or join my dad at his practice.”

He joined the practice and got hands-on experience treating children with many kinds of complex healthcare needs.

Bash was partially trained and was one of only three pediatric cardiologists in the state of Indiana. For 11 years, he referred his patients, who came from multiple states, to the two specialists he had trained with at Riley Children’s Hospital.

Bash was 40 years old when his dad started to retire.

“So, I figured it was time for a new wife, a Porsche or to go back into a training program,” Bash joked. “I kept my wife, never got a Porsche and completed my training to become a board-certified pediatric cardiologist. Most people do it the other way around, but I completed my academic training after being in private practice for more than a decade as a pediatrician.”

Bash, his wife, Patti, and their four children moved to Houston so that he could finish his fellowship requirements and complete an extra year of heart catheterizations at Texas Children’s Hospital.

Where’s Peoria?  

At age 42, Bash was in the job market and fielding offers. Dr. William Albers at OSF Saint Francis Medical Center invited him to Peoria.

“I was invited to visit numerous places around the country. We had Peoria at the bottom of the list,” Bash said. “Patti and I decided we would keep an open mind, look around and talk to people before making our decision. “

The Bashes toured Peoria and found there was a lot to like. He joined OSF Saint Francis Medical Center, where he helped start the Congenital Heart Clinic and connected with DSCC.

“I initially started with DSCC evaluating and accrediting congenital heart program centers in Illinois,” said Bash. “I quickly realized that these centers of excellence were only one piece and began to connect with the other subspecialists in the state.”

It was Dr. Bash who had the dream of starting the Children’s Hospital of Illinois. The hospital eventually grew from 15 pediatric subspecialists in 1985, when he joined the pediatric cardiology group, to 150 pediatric subspecialists. It also underwent a $283 million project that included building a new facility.

In 1986, as Peoria was taking on this project to grow The Children’s Hospital of Illinois, Dr. Albers stepped down from chairing DSCC’s Medical Advisory Board (MAB). He asked Bash if he would like to join the board.

Bash accepted and has been serving in many ways since.

“I will continue to help”

The MAB is a diverse group of healthcare professionals. Each offers a unique perspective on how DSCC can enhance our care coordination services for children with special healthcare needs.

“Over the years I’ve worked with all kinds of subspecialists. I’ve also seen what the families have to go through,” explained Bash. “DSCC’s (program) is the only one that coordinates care statewide and helps steer these families through a confusing maze of insurance changes, seeing all kinds of specialists and understanding their treatment options. The help DSCC provides is more important now than it’s ever been.”

Knowing the many challenges medically complex children and their families face, Bash has focused on breaking down silos and building lasting connections to improve care.

“I began connecting with other doctors and providers in the state. Just like DSCC covers the entire state, Peoria’s pediatric cardiology clinic outreach is also wide-ranging,” Bash said.

“Even if we were competitors, we could still cooperate. For example, OSF could refer transplants to Chicago or St. Louis. Silos don’t work for the families, so creating lasting partnerships to help these families has always been at the forefront.”

Bash said he has always tried to make serving on the board personal because “what you see in a clinic or the hospital isn’t the same as visiting a family in the home.”

“Visiting these families in their homes gave me a much different picture of what they were going through. It was very humbling and not something you will get from your hospital clinic experience. Now, DSCC is there to help these families coordinate care.”

The University of Illinois Board of Trustees appoints DSCC’s Medical Advisory Board members for a three-year term. The MAB membership currently includes pediatric specialists in cardiology, rehabilitation, plastic and reconstructive surgery, neurology and more.

“I am so impressed by our members and all that they do,” Bash emphasized.

“The amazing parent, specialist and staff presentations to the board continue to help us learn about and better understand the different specialties, the many pieces involved in getting and providing care and the ways we can help impact making the services these families need available. We volunteer because we love what we do, and the need is so great.”

Dr. Bash retired from OSF three years ago and continues to enjoy leading the MAB.

“I feel like I’ve lived in the best age of medicine for any physician,” said Bash.

“From the development and mass production of penicillin to the eradication of polio, to the amazing procedures now being done in pediatric cardiology, we’re now doing cardiovascular surgery that I never thought would be possible in such tiny hearts,” he said.

“I’ve had a fabulous career, and DSCC has been an important part of that. There is no question that the needs of these families are very complex. As long as DSCC allows me to, I will continue to help.”

Thank you for your exceptional service, Dr. Bash!

Visit our Medical Advisory Board page to learn more about the MAB and its mission.

Here’s a list of day, overnight and virtual camps to help you find the right fit for your child

It’s hard to believe another school year will soon come to an end.

The good news is there are a variety of opportunities to help your children stay engaged and continue learning during the summer break.

We’ve compiled a list of virtual, day and overnight camps across Illinois for all ages.

Does your child want to make new friends? Develop new skills? Meet others with their condition or foster their independence?

Our 2022 summer camp list can help you find an opportunity that is the right fit.

Many camps are returning to in-person sessions this summer. Virtual camp opportunities are also available.

All these camps are accessible for a variety of special needs and abilities, including many of our program’s eligible medical conditions.

Our events calendar shows the summer camps listed by date. You may also search for events in your area by clicking on a regional office near you.

Know of an in-person or virtual summer camp opportunity to add to our list?

Send us the details at dscc@uic.edu. We’ll continue to update our list of camps and activities, so please check back often. 

“My time with DSCC has not only shaped me as a social worker but also shaped my idea of the perfect team.”

As part of the University of Illinois Chicago, the Division of Specialized Care for Children (DSCC) offers internships and other valuable educational opportunities to college students. These opportunities help students gain real-world experience and complete their advanced degrees.

They also help develop the next generation of social workers, nurses and health care providers to serve children and families with understanding and compassion. 

To celebrate Social Work Month, we’re sharing how a DSCC internship provided life-changing experiences for one young social worker.

“My time with DSCC has not only shaped me as a social worker but also shaped my idea of the perfect team,” said Sruthi Thinakkal.

Sruthi wrapped up her two-semester internship with our Marion and Olney Regional Offices in December 2021. She recently graduated with her master’s degree in social work through the BHWELL Scholars Program at the University of Illinois at Urbana-Champaign.

Drawn to partner, help and connect

Sruthi said she discovered DSCC through her advisor. When she first began looking for internships, she was struggling to find the right fit.

About a month before she had to make her decision, Sruthi’s advisor mentioned a new internship opportunity with DSCC that recently opened.

Sruthi did her research and liked DSCC’s mission and approach to helping families. She decided to apply.

“The emphasis was on partnering with families and communities to help children and youth with special healthcare needs connect to services and resources,” she said. “Also, that children and youth with special healthcare needs should be at the center of a seamless support system really stuck with me.”

When Marion and Olney Regional Manager Amy Jones reached out to Sruthi, the “deal was sealed.”

“She spoke passionately about providing families support and teaching them the skills needed for success. Her enthusiasm and sincerity were contagious,” Sruthi said.

She felt excited but worried she would miss out on important opportunities because of the pandemic and working remotely.

Sruthi soon learned she was “in a really good place” and that remote work would be smooth and successful.

“A true team approach”

“From the beginning, the Olney and Marion regional offices provided me with information, cheat sheets, everything I needed to get situated. They would reach out in so many ways,” Sruthi said. “We used chat and had weekly meetings to bond and catch up. It was AMAZING, a true team approach.“

Sruthi shadowed DSCC Care Coordinators during their comprehensive assessments and person-centered planning conversations with families. She also helped Care Coordinators with data entry, scheduling and making calls to families.

One of Sruthi’s major accomplishments during her internship was a guardianship project for DSCC families and staff members in southern Illinois.

Sruthi created an extensive, easy-to-click-through tool kit that includes definitions for the various guardianship processes, step-by-step instructions, courthouse contacts, blank copies of needed forms and legal resources. She presented the toolkit to a group of more than 50 DSCC staff members in the southern region of Illinois.

“Sruthi’s project focused on (the question), could families complete this type of process on their own?” Amy said. “She diligently contacted all 32 courthouses in both regions, put together a comprehensive tool kit, then partnered with Care Coordinators to make calls and contact families. Already, one family she helped has successfully completed the process and another continues to work through the process.”

Amy praised Sruthi’s eagerness to learn and ability to soak up information.

Lessons for a lifetime

The end of the internship was bittersweet for both Sruthi and the Marion and Olney office teams.

“It’s hard leaving a fantastic team but the lessons I’ve learned will be with me always,”  Sruthi said.

“One of the biggest takeaways for me is the importance of just being there and listening. Chatting about every aspect of a kiddo, providing space to vent, helping to arrange something for a family that has so much going on every moment and obstacles no one expected, getting to know parents who are so worried about their kiddos that they forget about their own health, and hearing how they feel alone, not lonely,” she continued.

“These conversations with families each month create an everlasting relationship and lessons that I will carry with me for a lifetime.”

Sruthi is now moving to Chicago and launching her career in social work. She’s ready to take what she’s learned at DSCC and put it into action.

“I’m so grateful for my internship at DSCC,” she said.

“I will be working with the Rush Craniofacial Center team and believe that my internship experience at DSCC was key to helping me move into this position. I’m looking forward to building new partnerships, connecting individuals to the programs and tools needed for self-determination, and making sure that each patient knows that they have a team behind them that genuinely cares.”

Elijah’s Baby Bucket List is a social media movement raising awareness about lissencephaly while helping 4-year-old Elijah live life to the fullest

Elijah is quite the celebrity and not just among his nine older siblings.

The 4-year-old was born with a rare, terminal genetic condition called lissencephaly.

The devastating diagnosis led his family to create a bucket list to fill Elijah’s lifetime with as much happiness and adventure as possible.

“Elijah’s Baby Bucket List” is now a popular social media movement dedicated to raising awareness about lissencephaly. It also provides opportunities for Elijah to live life to the fullest while spreading joy and making new friends and memories.  

Elijah’s story has appeared on TV, in print and online. He also has thousands of followers from around the globe on platforms including Facebook, Instagram, YouTube and TikTok. His followers read about his latest experiences and enjoy videos of his infectious laughter and smile.

“He’s always happy, always laughing. It’s hard to stay sad when he’s around,” said his mother, Amy Tarpein. “He is unconditional love and the embodiment of pure joy.”

“Choose joy”

Elijah, a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), was born deaf. Approximately two months later, he was diagnosed with lissencephaly.

Lissencephaly occurs when the folds and grooves of the brain do not develop correctly. 

“It was devastating. The doctors said he wouldn’t live beyond the age of 2,” Amy recalled. “We were packed and ready to spend time at my sister’s. Instead, I loaded up the kids, left the hospital and we drove to Florida to see the ocean.”

During that trip, the idea for Elijah’s Baby Bucket List was born.

 “It can all be really hard, but we decided that we could either sit around and feel sorry about things or choose to give Elijah the best, God-filled life possible while he’s here. We decided to choose joy, be grateful, encourage others and hope,” Amy said.

Through “Elijah’s Baby Bucket List”, the family shares inspirational messages, videos and updates as they work through experiences on Elijah’s bucket list.

“We’ve shared about the first time he heard his sister sing, visits to the hospital and doctors, and our adventures to the Morton Arboretum, Beyond Van Gogh Exhibit, St. Louis Aquarium, hiking in the mountains, observing stars with a NASA scientist, picking pumpkins, playing in the leaves and a private screening of ‘Clifford the Big Red Dog,’” Amy said.

 “The focus is on Elijah doing or watching the things on the list and making as many memories and friends as possible!”

Other recent highlights include the city of Quincy declaring Sept. 8 as Lissencephaly Awareness Day and lighting the Bayview Bridge purple in his honor.  The Quincy Herald-Whig newspaper covered the special honor and Elijah’s story last fall.

“Our town came together to spread awareness and advocate for kids who are differently-abled. They lit up the bridge purple for Elijah, ” Amy said.  “I can’t express the emotion that overwhelmed me when we were also given a beautiful photo of the purple bridge taken by a local artist. The community support for my family has been amazing.”

“Be a light”

Amy says her family loves Elijah fiercely. He has five grown siblings and four at home — Avayha, Isaiah, Kaylynn and Mackenzie – who dote on him.

They enjoy spending time together reading, studying, looking at and doing art, listening to music and cuddling.

“Avayha practices violin with him. She tells him the strings and what she’s playing. He loves music,” said Amy. “When we go to museums, she will read all of the descriptions and tell him about the exhibits and artwork.”

Elijah’s lessons include learning sign language and using his computer with an eye gaze device.

“He’s doing stuff they said he would never do,” Amy said. “He’s gotten really good at matching his letters, numbers, colors and shapes. He signs mom, dad, call, dog, no and will also sign ‘all done’ when he doesn’t want to get into his AFOs, the orthotics braces, because they are uncomfortable.”

Elijah’s sister Avayha wants to take him to Paris to drink lemonade and see the museums. She set up a lemonade stand to fund the trip, but the COVID-19 pandemic soon followed.

“Avayha asked if she could learn web design, so she could build up her own site,” Amy said proudly. “At 9-years-old, she studied and set everything up on her own. She’s determined to take him.”

Avayha’s website is Lemonade in Paris.

Amy calls caring for Elijah life-changing in the best possible ways.

“If someone had told me that five years ago, I would not have believed it. This was not the plan, but I love my life,” she said.

More to Explore

DSCC has worked with Elijah’s family since 2019. As Elijah continues to check off items from his baby bucket list, DSCC continues to help support his family’s journey.  

“DSCC collaborates with a wide range of agencies,” said Elijah’s Care Coordinator Kathy Thomas. “We’re here to listen and help families with children with complex health needs navigate insurance, health care and other resources.”  

DSCC’s Care Coordinators work countless hours helping families set and achieve their child’s goals based on their family’s unique needs.

Amy continues to plan new adventures for Elijah, stay positive and share the positivity with others.

“Elijah continues to defy the odds,” she said.

“Some things can’t be fixed, only carried! Life is full of things you can’t fix, no matter how well-intentioned you are. God, your higher power or whatever you believe in, always sends someone. I can’t explain half the stuff that happens in our lives, but we are braver together. This was not my plan, but I am truly blessed to be his momma.”

To learn more about Elijah and lissencephaly, follow Elijah’s Baby Bucket List on Facebook or visit elijahsbabybucketlist.com.

DSCC partners with IL LEND to offer an online space for parents to learn about important topics, gain resources and discuss strategies

A new webinar series provides an online space for parents and caregivers to access educational workshops, learn about resources and discuss strategies and support needs.

The series is open to all parents and caregivers of children enrolled with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

It’s the result of a partnership between DSCC and UIC’s Leadership and Education in Neurodevelopmental and related Disabilities Program (IL LEND).

There is no cost for families to participate.

Please note this workshop series now has a parent education focus rather than a traditional support group.

The virtual workshops will take place via Zoom on the third Wednesday of the month through April.

Workshops topics may include:

• Respite care
• Feeding
• Ventilator maintenance/cleaning
• Transportation
• Navigating relationships with staff

The workshop schedule is for the following dates from 7 to 8 p.m.:

• Feb. 16
• March 16
• April 20

The topic for the Feb.16 session is Early Intervention. The guest speaker is Maria Kastanis, assistant director of the Early Intervention Training Program (EITP) at the University of Illinois at Urbana-Champaign.

The details and registration information for the next meeting are below:

• WHAT: Educational workshop series for parents/caregivers of children and youth enrolled in DSCC’s programs
• WHEN: Feb. 16, 7 to 8 p.m.
• TOPIC: Early Intervention (Note: the discussion part of the workshop will include a facilitator for Spanish-speaking families.)
• WHERE: Virtual via Zoom
• Registration link

Visit the workshop series website for more details about the series and individual meetings.

We’ll also post details about upcoming meetings in the Events section of our website.

If you have questions about the series or an individual meeting, please fill out the Contact Us section of the workshop series website.