Project to Improve Mental Health Support Benefits DSCC Teens

January 5th, 2024

DSCC participant Lily Kohtz and her mother, JoAnn Watkins enjoyed attending the 2023 Statewide Transition Conference.

The B.E.S.T. study looks at how care coordination services that include mental health support can help teens with intellectual and developmental disabilities.

The teenage years can be a challenging time for all teens, including teens with intellectual and developmental disabilities (IDD).

Is your teen or young adult feeling sad, stressed or overwhelmed?

Consider joining the B.E.S.T. study. B.E.S.T. stands for Behavioral Health Stratified Treatment (B.E.S.T.) to Optimize Transition to Adulthood for Youth with IDD. 

The B.E.S.T. study wants to know if care coordination services combined with mental health programming can help teens with IDD live happier and healthier lives. 

All Division of Specialized Care for Children (DSCC) participants receive care coordination services. B.E.S.T. study participants receive access to additional behavioral and mental health resources and support.

DSCC participant Lily Kohtz, 19, (pictured on the left in the above photo) says her mental health has improved since taking part in the B.E.S.T. study.

Lily has spina bifida, uses a wheelchair and has difficulty with anxiety and depression due to her disabilities.

“I think a lot of people don’t connect anxiety or depression to having a disability,” she said. “The B.E.S.T. study has helped me talk about these things. We all have bad days, but depression is worse. Understanding how disability and mental health are tied together and having strategies to use to help me cope has really helped me.”

Lily says she’s enjoyed the online group sessions, where she now meets monthly with four other teens and a group leader. All meetings are confidential. 

“We go over coping strategies such as controlling your thoughts and getting rid of the negative. I frequently use the skills we’ve learned and feel like my mental health has improved,” she said. 

Lily’s mom, JoAnn Watkins (pictured on the right in the above photo), agrees that the study has benefitted Lily in many ways.   

“I’ve seen a positive difference in Lily since she started with the B.E.S.T study. She’s using the skills she’s learned, and you can really see the improvement in her attitude and overall mental health.”

The study began recruiting participants in late 2022. More than 250 DSCC participant families have enrolled in the study so far. 

Eligible DSCC participants must be enrolled in DSCC’s Core Program or Connect Care Program. (Please note that DSCC teens enrolled in the Home Care Program are not eligible to participate.)

The B.E.S.T. study is a free and voluntary project. Teens can join the study if:

  • They currently have a DSCC Care Coordinator and are enrolled in DSCC’s Core or Connect Care programs.
  • They are between 13 and 20 years old.
  • They have an intellectual or developmental disability.
  • They can comprehend at a fourth-grade or similar level.
  • They can read and speak English.
  • They have a computer, tablet or smartphone they can use to access the internet.
  • They have permission from their parent, caregiver or guardian (if they are under 18).

The B.E.S.T. study team developed the project with input from a group of B.E.S.T. Study Scholars. These scholars are teenagers with IDD who tested and reviewed all of the B.E.S.T. study materials.

Teens who join the study are put into one of two groups:

  • Group A receives care coordination services as usual from their DSCC Care Coordinator.
  • Group B receives care coordination services and mental health support from the B.E.S.T. team. This support is based on each teen’s needs and can include:
    • Mental health education
    • Online group sessions
    • Caregiver education and support

The study is a virtual program that will continue recruiting through December 2025.

The B.E.S.T. study is a partnership between DSCC and the University of Illinois Hospital and Health Sciences System (UI Health), the University of Illinois Chicago’s (UIC) Department of Disability and Human Development and the UIC Department of Pediatrics.

The principal investigators are Dr. Benjamin Van Voorhees and Dr. Kristin Berg.

The B.E.S.T. study team includes mental health professionals from Illinois, California and Massachusetts. They are all working together to find a way to promote the health and well-being of teens with IDD.

You can learn more information for both teens and parents/caregivers on the B.E.S.T. study website.

If you would like to join the study or have questions, please email the B.E.S.T. study team at beststudy@uic.edu or call (833) 732-5778.

If you choose to join, you and your family can support research that helps other teens and families.

Both parents/caregivers and teens must agree to be in the study. (Note that if a teen is their own legal guardian, they can participate alone or with a parent/caregiver if they choose.)

Those who join will be compensated for their time.

We’re excited to continue our partnership on this important research project!

Introducing “All About Me” Pages to Highlight Your Child’s Strengths, Needs and More

December 13th, 2023

We’ve created free templates you can personalize to help doctors, schools and others get to know your child

It takes a village to care for children and youth with special healthcare needs. Parents and caregivers must partner with many different team members — specialists, nurses, therapists, educators and so on — to help their children reach their full potential.

Ensuring everyone understands your child and their unique needs can be exhausting. We want to help make it easier to share your child’s strengths, wants, goals and more.

All About Me Page template with a sun design

We’ve created “All About Me” Pages that you can personalize to help anyone get to know your child. These free templates highlight what works best for your child, what they like and dislike and who they are as a person.

There are a variety of designs to choose from to help you capture your child’s personality and what makes them unique.

Visit the new “All About Me” Pages section of our website to see the templates and learn how to customize them for your child. 

Our “All About Me” Page templates are available for anyone to download and customize.

If you are a Division of Specialized Care for Children (DSCC) participant and need help using the templates, please contact your Care Coordinator. 

These pages are a result of feedback from our annual family surveys and our Family Advisory Council meetings.

We hope these pages can be helpful conversation starters with new doctors, nurses, teachers and other caregivers for your child. 

Sensory-Friendly Holiday Happenings in Illinois

November 22nd, 2023

An older, dark-haired boy in a wheelchair smiles at the Christmas trees and holiday decorations that surround him

Fun, inclusive events the whole family can enjoy throughout Illinois!

How will you make memories this holiday season?

There are light displays, sensitive Santa opportunities, parades and more going on throughout Illinois.

Our Special Events page includes a roundup of opportunities designed specifically for youth with disabilities and special healthcare needs.

You can also browse this collection of special programs and event guides for opportunities to create some holiday magic and plenty of smiles:

We will continue to add holiday events and activities, so please check our Special Events page often throughout the season.

If you know of a good sensory-friendly event to share, please email us at dscc@uic.edu.

Please note, the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC) is not involved in organizing or scheduling these holiday events. If you have questions about a specific event, please contact the event sponsor or organizer.

DSCC Dad Helps Superheroes of All Abilities Unite in Southern Illinois

October 18th, 2023

DSCC participant Isabella's older brother Braden wears a Superman costume and holds Isabella in his arms next to Isabella's nurse, Toni. A superhero comic backdrop is behind them.

Pastor Tim Reynolds organizes the annual Special Needs Superheroes event to take place in Mount Vernon on Oct. 28

In Mount Vernon, superheroes of all kinds unite each year to bring joy to children and adults with disabilities.

Mount Vernon Baptist Temple’s annual Special Needs Superheroes event encourages individuals of all ages and abilities to dress as their favorite superhero and enjoy fall activities together. This popular free celebration returns for its fifth year on Oct. 28.

Pastor Tim Reynolds helped create the event and credits his wife, Melissa, and a dedicated group of volunteers with keeping it running. Reynolds’ daughter Isabella has complex medical needs and is a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC).

Isabella and her dad, Tim, take time out for a selfie.

Reynolds said the idea for the event came from a desire to serve his small community in southern Illinois.

“It can be hard for families and individuals with disabilities to go to a theme park. We have a church with a good layout, nice grounds, and a gymnasium,” Reynolds said. “I pastor two churches, and we decided to work together to create a special day for young and old alike that was as close to a carnival atmosphere as possible.”

Choosing a superheroes theme, the first event kicked off in 2018.

“I’m not sure why we chose the superheroes theme, but it fit, and it’s lots of fun. The first year we had about 400 attendees,” Reynolds said.

The event continued to grow each year except for a one-year gap in 2020 due to the COVID-19 pandemic.

“This year we’re planning for more than 800 guests. We have a bunch of folks who love Comic-Con. They have amazing costumes and travel from Missouri, Kentucky, Indiana and other places to help us year after year,” Reynolds said.

Volunteers from churches, 4-H clubs, government, and more serve as “buddies.” They help participants of all ages and abilities experience activities that include:

  • A petting zoo and horseback rides
  • Face painting and games
  • Balloon tying with Rainbow the Clown
  • Superhero photos
  • Haircuts
  • Brats, hamburgers, snow cones and popcorn
Guests enjoy painting and creating art they can take home at one of the many activity stations at the Special Needs Superheroes event.

“It’s just a big kick. Some people like dressing up, others just like taking it all in,” Reynolds said. “I really love the horseback riding and seeing them with the animals. For some, it’s the first time they’ve ever ridden a horse or been able to touch and be up close to these animals. They’re so uninhibited in expressing their excitement and joy. You can’t help smiling all over.”

The guest list also includes community members and residents from area Community Integrated Living Arrangement (CILA) Homes.

The whole Reynolds family, including Isabella and her three older siblings, also take part in the fun.

Reynolds said his wife, Melissa, organizes all the details for the superheroes event. She prefers to remain in the background while he is “just the promoter and front man.”

“She is the rock of our family and works tirelessly caring for Isabella,” Reynolds said.

Isabella and her mom, Melissa, share a smile.

Isabella has Moebius syndrome, a rare neurological disorder that can cause paralysis, an inability to smile and other disabilities.

“We adopted her as a baby and the doctor said she wouldn’t live past a year old,” Reynolds said. “She’s a happy girl and recently turned 12.”

Isabella enrolled with DSCC shortly after birth and receives services through the Home Care Program. The Home Care Program helps children and young adults who need in-home nursing to safely live at home.

“We connected with DSCC at the hospital and really appreciate all that they do,” Reynolds said. “DSCC has helped us track down nursing services and medical equipment. They’re always there to help and are another go-to when you need help filling in the gaps.”

Members of our DSCC team from the St. Clair Regional Office will be at this year’s Special Needs Superheroes event to speak with families about our services.

The event takes place from 4 to 6:30 p.m. on Oct. 28 at Mount Vernon Baptist Temple, 817 Woodland Drive, in Mount Vernon. There is no charge to attend.

“Everything is completely free,” Reynolds emphasized. “There’s nothing better than the smiles and hugs you get from kids with sno-cone-covered faces. We started all of this to be a blessing to someone, but I think we, the volunteers, are truly the ones who go away blessed.”

See the Special Needs Superheroes flyer for more details or visit the Events section of our website.

If you’d like to attend, please call or text (618) 315-1111 to register. The deadline to sign up is Oct. 23.

Project Fire Buddies Helps DSCC Participant Attend Concert of Her Dreams

June 12th, 2023

The Brown family at the Taylor Swift Concert.

Lily Brown and her entire family saw Taylor Swift perform at Chicago’s Soldier Field

Lily Brown and her family experienced a whirlwind week earlier this month that they won’t soon forget.

Lily is Taylor Swift's number one fan
Lily smiles with her “Taylor’s #1 Fan” sign

The 14-year-old Oak Forest girl graduated from eighth grade. She then played in an adaptive Little League Challenger baseball game.

But the week’s biggest highlight was seeing Lily’s favorite artist Taylor Swift in concert at Soldier Field in Chicago on June 2.

“It was a very special week for all of us,” Lily’s mom, Jennifer Brown, said.

A nonprofit group of Chicago-area firefighters called Project Fire Buddies made the unforgettable concert experience possible.

The Brown family at the Taylor Swift Concert.
Lily’s mom, Jennifer, her older sister, Grace, and her dad, Jon, pose with Lily inside Soldier Field before the concert.

Lily has Rett syndrome, a rare genetic neurological disorder. The condition can severely affect abilities such as speaking, walking, eating and even breathing.

Lily has seizures and uses a wheelchair. Even though she doesn’t speak, she says a lot through her expressive eyes and huge smile.

She is also a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC). DSCC partners with families to help them find the right services and resources for their child’s special healthcare needs.

In January, Lily turned 14. For her birthday present, Jennifer wanted to take her to see Taylor Swift, who announced her concert tour would include Chicago.

“I took her older sister, Grace, when she was about 9 years old to see Taylor Swift. It was a really special mother and daughter experience,” Jennifer explained. “I wanted Lily and I to have that same experience. Due to the pandemic, Taylor Swift hasn’t toured for a while.”

Lily smiles with the Fire Buddies baseball team
Lily smiles while posing with the Firebuddies baseball team.

From the day the tour was announced, they searched for two accessible tickets nearly every day. But their search came up empty. Then, the Oak Forest Project Fire Buddies heard about Lily’s wish to see Taylor Swift.

The Oak Forest Fire Department created Project Fire Buddies in 2016. Its mission is to bring joy to kids struggling with serious illnesses and their families. Volunteers visit the kids throughout the year to deliver gifts for special occasions, play games, read books or just to say “hi” and spend time together.

“We love the fire buddies!” Jennifer said. “We’re so grateful for all that they do. They gave Lily a bike made specifically for her needs so that she can enjoy riding. This year, she’s also playing with the Challenger’s baseball team and enjoyed playing against the Project Fire Buddies team.”

Lily at the Taylor Swift concert
Lily smiles while wearing her “Shake It Off” t-shirt during the concert.

Now, Project Fire Buddies has made Lily’s ultimate birthday wish come true and more.

“Our family usually has to use the divide and conquer approach. We don’t get to attend events together very often,” Jennifer said. “It was an incredible surprise to learn that our Oak Forest Fire Buddies chapter found tickets for our entire family and worked with Soldier Field to have the area accessible for Lily’s wheelchair. We were just blown away.”

Since no “Swifty” can go to a concert without bling, everyone made sure Lily had just what she needed for the big night.

“We made a cute ‘Shake it Off’ shirt with all the sparkle and bling any Swifty would be proud of,” Jennifer said. “We also made a sign, and friends also got her some flashy, light-up flare.”

Lily at Taylor Swift concert in Chicago.
Lily looks out over the crowd at the Taylor Swift concert.

The Brown’s had an amazing time – together – at the Taylor Swift concert.

“The show was incredible, and Lily loved it,” Jennifer said. “She did have a couple of seizures during the show but bounced back in time to catch her favorite song, ‘Shake it Off.’”

“Project Fire Buddies is hoping to expand to help more kids who are medically challenged or have life-threatening conditions,” Jennifer added. “The Oak Forest chapter is amazing and incredibly generous. They are an important part of Lily’s life, and we are so thankful.”

Visit our Resource Directory to learn more about Project Fire Buddies.

You can also read about the news coverage of Lily’s special concert experience:

Thank you to Project Fire Buddies for making Lily’s wish come true!

Upcoming Education and Scholarship Opportunities for Young Adults with Disabilities

April 7th, 2023

diverse group of college students taking a selfie in a grassy area outdoors on a college campus

Learn more about the Illinois Community College Initiative and 2023 CSBG Scholarship Program

Finding the right programs and resources is key when planning for the future as a young adult with disabilities.

Two programs currently offer valuable education, training and scholarship opportunities for Illinois youth interested in college or joining the workforce after high school.

Illinois Community College Initiative

The Illinois Department of Human Services’ Division of Rehabilitation Services (DRS) wants to help people with disabilities in their quest for success.

The Illinois Community College Initiative provides academic and vocational training programs for eligible students with disabilities at in-state public community colleges and approved community colleges bordering the state.

People with disabilities who are eligible for the DRS vocational rehabilitation program are eligible to participate. You may complete community college coursework leading to an associate degree or to a degree, certificate or other industry-recognized credential or certificate.

DRS will help you with:

  • Tuition
  • The cost of fees, books and supplies
  • Transportation costs
  • Other eligible costs

See the Illinois Community College Initiative flyer for more details.

Spanish-speaking families can listen to the radio ad or read the ad transcript in Spanish.

Ready to get started? Contact your local DRS office using the locator tool or call (877) 581-3690. TTY and relay callers can dial 711.

2023 C.E.F.S. Economic Opportunity Corporation’s CSBG Scholarship

C.E.F.S. Economic Opportunity Corporation has a scholarship program to help students pay for college or occupational training.

The CSBG College Scholarship program provides financial help to income-eligible students living in the following counties:

  • Christian
  • Clay
  • Effingham
  • Fayette
  • Montgomery
  • Moultrie
  • Shelby

You can use the scholarship to pay for formal education or occupational training in an accredited Illinois educational institution. Training and degrees may include:

  • Associate, bachelor’s or master’s degree, post-secondary education
  • General education, short-term training (two years or less) in growth occupation skills

The CSBG scholarship is competitive and awards students based on:

  • Income
  • The interview process
  • Choosing to go into high technology areas or other growth occupations

Previous scholarship recipients can submit an application. You must be enrolled or intend to enroll as full-time students for the fall 2023 semester in an Illinois-accredited college. Full-time is 12 hours or more.

Click on the CSBG Scholarship application or get an application at your county C.E.F.S. outreach office. The application includes contact information for each local office.

You can also visit the C.E.F.S. website for more information.

You must complete your application and submit all requested documents to your local office by April 14 at 4 p.m.

All eligible candidates will have an interview in May.

Find More Transition Resources

Visit the Transition Tools section of our website to find more programs and information to help with planning and paying for college, getting a job and more.

You can browse the Transition: Education Resources and the Transition: Work Resources categories to find what you need.

Our team is also here to help partner with you and your family to help make the transition to adulthood as successful as possible.

Contact us to find out more!

2023 Summer Camp Opportunities for All Ages and Abilities

March 29th, 2023

The text, "Summer Camp," written with chalk on chalkboard next to chalk sticks of different bright colors

Check out our list of inclusive camps to help you find the right fit for your child

It’s never too early to start planning for summer break activities.

Fortunately, there are a variety of opportunities for children and young adults with special healthcare needs.

We’ve compiled a list of day and overnight camps across Illinois as well as virtual programs.

Does your child want to make new friends? Develop new skills? Meet others with their condition or become more independent?

Our 2023 summer camp list can help you find the right fit.

These camps are accessible and inclusive for a variety of needs, 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 a good 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. 

Meet Medical Advisory Board Member Dr. Shubhra (Sue) Mukherjee

March 8th, 2023

Dr. Shubhra Mukherjee has a beautiful smile, brown eyes and short, dark brown hair that frames her face. She is wearing glasses. The frames are dark red and are shaped like an oval that has been slightly squared on one end. She is wearing a navy colored, sleeveless top that has a honeycomb pattern woven into the fabric

“DSCC understands the importance of supporting families and coordinating care.”

Dr. Shubhra Mukherjee, also known as Dr. Sue, is the medical director of pediatric and adolescent rehabilitation medicine at Shriners Children’s Chicago.

Mukherjee currently cares for patients up to age 22. Her background includes working with young adults with complex healthcare needs and collaborating across medical specialties to help these patients and their families connect with the care they need.

She has served on the Division of Specialized Care for Children’s (DSCC) Medical Advisory Board (MAB) for more than 16 years.

Mukherjee’s expertise in physical medicine and rehabilitation combined with a deep interest in the transition of care for children with complex healthcare needs has been a great fit.

“DSCC understands the importance of supporting families and coordinating care,” said Mukherjee. “I appreciate their statewide focus and how the MAB serves as an avenue for clinician input on what changes are needed, sharing feedback about the struggles we encounter helping patients get what they need, and working together to find solutions.”

Putting the Focus on Transition

When Mukherjee joined the board, schools were just beginning to explore the need to help students build the skills needed to transition to adulthood.

“They were looking at ways they could better prepare students to go on to jobs, college and life after high school,” Mukherjee explained. “In pediatric care, we realized that we needed to be doing the same thing for children with complex healthcare needs and their families.”

The DSCC team had the idea to increase the participation of medical professionals at the annual Illinois Statewide Transition Conference. We wanted to create a more proactive approach to helping children and their families make the transition from pediatric care to adulthood.

Mukherjee teamed up with DSCC’s former Title V Transition Specialist Darcy Contri to help put the idea into action.

“DSCC was already doing great work providing family support, tip sheets, and facilitating face-to-face conversations about transition. This was just one more piece of the puzzle,” said Mukherjee. “Darcy and I set up the first health care track for the Statewide Transition Conference with a goal of building more clinical engagement and increasing awareness and support for patients with complex health care needs and their families.”

The health care track has provided information and presentations with and for doctors and others providing complex care. According to Mukherjee, it continues to be a catalyst for building connections, sparking ideas, and inspiring healthcare professionals.

“I got to see that impact firsthand when one of our occupational therapists (OT) attended the conference with me,” Mukherjee said. “She was so moved that she became a big proponent of the OT’s role in developing and teaching adolescents skills related to health care.”

Opportunities to Collaborate

Mukherjee appreciates how the MAB fosters collaboration, networking and the development of partnerships. This work continues to create more options throughout Illinois for patients with complex care needs.

“It’s very rewarding to grow my knowledge and connect with like-minded professionals across so many different specialties,” Mukherjee said. “We’re able to share, provide feedback, and exchange ideas around removing barriers and supporting patients with complex healthcare needs at all stages.”

Mukherjee said DSCC also continues to be a major source of support for her own patients.

“Care coordination is so important for these families,” said Mukherjee. “DSCC helps them find the right care or specialist, get to appointments, and locate funding for the services they need to stay well and engage in their community. DSCC is there for the child and family.”

Mukherjee also leans on DSCC for updates and information.

“DSCC helps me keep track of program changes and learn about new services or programs that are available,” Mukherjee emphasized. “DSCC plays a vital role in sharing information and connecting the many different entities that individuals with complex needs depend on for their care.”

Awareness Brings Progress

Mukherjee said there is still a great need for education about the transition to adulthood and its importance.

“I’m glad to see the growing awareness and interest by professionals in helping youth develop the skills they need to be successful as adult users of the healthcare system,” said Mukherjee. “We are seeing more adult providers who understand the needs of young people with disabilities who are aging out of pediatric care.”

Awareness has brought progress, but challenges remain.

“Pediatric and adult care are not set up in the same way. For example, a spina bifida clinic and spinal care clinic are similar, but they are not the same. Adults with complex conditions going to a spinal care clinic may not be getting all of their needs met,” said Mukherjee. “The special pediatric clinic that addressed all their needs as a kid doesn’t exist in the adult care system.”

Mukherjee’s own focus on the transition to adulthood remains as strong as ever.

“I’ve been following some of the research initiatives at the University of Illinois Chicago. It’s exciting to see they are collecting data, exploring different aspects of complex care and its costs, and working towards building a framework that brings all the pieces together for adults with complex care needs,” she said.

“DSCC plays a vital role,” Mukherjee noted. “Sharing their information and ensuring it’s always there for the families we serve is important.”

Thank you, Dr. Sue, for your leadership to help families and professionals support the successful transition to adulthood!

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

Sensory-Friendly Easter Bunny Visits

March 3rd, 2023

Little girl smiles while hugging the Easter Bunny

Hippity-hoppity, the Easter Bunny is on its way!

Sensory-friendly Easter Bunny visits are happening at sites throughout Illinois and the St. Louis area. Individuals of all ages and abilities may schedule an appointment.

The visits will take place in a calmer, quieter environment that supports visitors’ sensory, physical and developmental needs. Autism Speaks is partnering with Cherry Hill Programs to provide these special Easter Bunny photo events.

The Bunny Cares experiences are free. Photos will be available to buy at each event.

You can see the Easter Bunny on March 26 at the following locations (in the “Reserve” section for each location, click on the “Events” button and select “Bunny Cares”):

Reservations are limited. Visit the Bunny Cares website for a complete list of sites and to reserve your spot.

Many communities are also hosting sensory-friendly egg hunts and opportunities to meet the Easter Bunny. To find these events and other family-friendly spring activities, hop on over to our Special Events page.

DSCC Toddler’s Birthday Celebration Benefits Hospital Patients

January 27th, 2023

Eloise is wearing a light grey, long-sleeve fleece top and a cone-shipped birthday hat. The hat is made of light orange paper and that is decorated with a peace sign, flowers, a smiley face and a pom-pom on top. Her wheelchair has bright pink support pads that really pop in this picture.

To celebrate Eloise turning 3, her family threw a “groovy” birthday party to provide comfort and treats for patients and their families at OSF Children’s Hospital of Illinois

Birthdays are major milestones in every child’s life. For families of children with rare diseases, they’re especially precious.  

Eloise was diagnosed with alobar holoprosencephaly when her mom, Rachel, was 20 weeks pregnant. This congenital condition causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).

“There are several types of holoprosencephaly and alobar is the most severe. We had no idea if she would be born alive or how long she would live,” Rachel said. “She spent 20 days in the NICU (neonatal intensive care unit) before going home on hospice just before COVID-19 hit.”

Her first birthday didn’t seem possible, let alone future birthdays. But Eloise defied the odds. The Division of Specialized Care for Children (DSCC) participant moved from hospice to palliative care. Eloise is now a feisty 3-year-old who brings joy to everyone she meets, Rachel said.

To celebrate Eloise turning 3 in November, her family planned a special birthday party to benefit the patients and their families at OSF Children’s Hospital of Illinois. The party, dubbed “Eloise Fest – Let’s Get Groovy,” provided plenty of treats and gifts from local businesses. The celebration also donated new sound machines to create a more calming setting for families.  

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

Eloise has spent time in nearly every pediatric unit of OSF Children’s Hospital. Rachel and her husband, Zach, got the idea for Eloise Fest when they noticed some of the hospital rooms didn’t have sound machines. 

“Eloise’s first and second birthdays we raised money for the Carter Centers for Brain Research in Holoprosencephaly and Related Brain Malformations. This year we wanted to do something more tangible,” Rachel said.

“It may seem like a small thing but hearing the beeps and monitors all the time can be really stressful for families and patients. A sound machine helps provide calm by drowning out the medical stuff. During our stays, we usually set our machine on the ocean setting and it helps provide a sense of calm that’s hard to come by in a hospital. We wanted to help other families have that same sense of calm.”

Rachel and Zach worked with the hospital to find out how many sound machines each department needed. The couple then posted a wish list for their family and friends to buy 92 sound machines and related supplies. They fulfilled the wish list within three days.

“It was so touching to see how many people are impacted by Eloise’s story and are there supporting and loving her,” Rachel said.

Eloise’s “groovy” themed party also included her favorite music playlist and a VW bus photo station that traveled from floor to floor.  Local businesses also donated an array of food and non-food goodies for patients and staff.

“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 that includes doctors who understand and all the support our friends, family and DSCC provides. How else would we have gotten here?”

You can see more photos from Eloise Fest and the list of local business donors on OSF Children’s Hospital’s Facebook page.

Read more about Eloise’s powerful journey on our Family Stories page.