St. Louis Children's Hospital is proud to be a Children's Miracle Network affiliated hospital.
Every dollar raised by Children's Miracle Network (CMN) of Greater St. Louis, through the generous contributions and support of individuals, as well as local and national sponsors, helps Children's Hospital acquire programs, equipment and facility renovations to meet the needs of area kids.
Since its inception in St. Louis in 1988, CMN has donated more than $50 million to St. Louis Children's Hospital and SSM Health Cardinal Glennon Children's Hospital.
Visit www.cmn-stl.org for more information!
Read more about our 2022 CMN Patient Ambassadors below!
Outgoing, and a hard worker, Ella loves school, the color pink and dancing. She's the older sister to her younger brother, Jake, who is 5, and is full of personality. She's known to everyone as caring, empathic and accepting of others. After all, she knows what it's like to be a little bit different because she lives with cerebral palsy, a disorder that affects a person's ability to move and maintain balance and posture.
Ella's mom was 16 weeks into her pregnancy when doctors noticed Ella was a lot smaller than she should have been at that point, so her mom was put on bedrest. Doctors monitored Ella carefully and determined that she was continuing to struggle and needed medical intervention. Born at just 27 weeks, Ella was diagnosed with fetal growth restriction, a condition in which the unborn baby is not growing at a normal rate. When she was 2 weeks old, she suffered a brain bleed and was subsequently diagnosed with periventricular leukomalacia (PVL), a softening of brain tissue due to her brain bleed. PVL has no cure and affects the nerve cells that control motor movements and occurs most often in babies who are born before 30 weeks. She spent her first 4 months of life in the neonatal intensive care unit and when she finally came home from the hospital, she continued to receive therapy services to help her stay strong and thrive.
During Ella's involvement with First Steps, Missouri's early intervention program for infants and toddlers, her therapists recommended a visit with T.S. Park, MD, who specializes in treating children with cerebral palsy using selective dorsal rhizotomy (SDR) at St. Louis Children's. After meeting with Dr. Park, who has completed more than 4,500 SDR surgeries, 2-year-old Ella was approved for SDR. Her surgery was a success and she stayed at St. Louis Children's for six days. During her recovery from surgery, Ella still got to enjoy being a kid while inside the hospital walls with visits from therapy dogs and time in the playroom.
Dr. Park continued to monitor her progress while she continued to gain strength with her therapy sessions. Her care team decided that a second surgery would benefit Ella greatly and in June 2020, she had a hip adductor surgery to release tightness in the hip muscles.
Now 9 years old, Ella attends weekly therapy at school and after school and also participates in intensive sessions at St. Louis Children's during the summer. She's active in physical, speech and occupational therapies and weekly dance classes. She also participates each year in Tri My Best, an adaptive triathlon hosted by St. Louis Children's and Washington University.
How CMN Funds Help Ella and Kids Like Her:
St. Louis Children's Camp Independence was developed specifically for children with cerebral palsy and other movement disorders. Focusing on adaptive sports, this day camp provides confidence in their athletic abilities and has a lasting impact on the children who attend. Thanks to funds from CMN, Camp Independence and other specialty camps show Ella and her peers what they are truly capable of achieving.
Watch Ella's Story
A cheerful young lady, 11-year-old Mariah loves making Tik Tok videos, dancing and singing along to her favorite songs. She loves school and her smile is contagious.
When Mariah was born, she was tested for sickle cell disease as part of routine newborn screening and her results were labeled abnormal. After almost weekly trips to the emergency room due to spiking fevers, at 4 months old she was given the official diagnosis of sickle cell disease — a genetic disease that alters the shape of the body's red blood cells, causing them to become sticky and trapped in the body's blood vessels.
Initially doctors labeled her type as SS, which is the most common type of the disease and is inherited from both parents. But after a series of tests done several years later, Mariah's diagnosis changed to SB 0, which is classified as a more severe version that mimics SS but involves a different gene.
No matter the type, kids like Mariah all share similar symptoms like excessive fatigue, frequent infections and pain crises. When Mariah was around 6 months old, her spleen became enlarged, another symptom of the disease, and after several months of observation, doctors made the decision to remove it when she was almost a year old.
Through the years, Mariah has been a frequent visitor to St. Louis Children's because of fevers, viral infections and pain. Initially her stays would be short — just a few days — but as she's gotten older the visits have gotten longer, due to an increase in the pain and stress the disease is putting on her body. She must remember to take daily medication to increase hemoglobin production and reduce a chance for more damaging effects.
In December 2020, she came to St. Louis Children's and not only was she admitted to the hospital, but she was sent to the pediatric intensive care unit (PICU) because her oxygen levels had dropped below a normal range. If not properly treated, Mariah could lose heart and brain function. After several days, she was released from the PICU and was able to leave the hospital once her pain has subsided.
Mariah is currently in a maintenance phase with her disease, and has managed to stay out of the hospital, thanks to education from her medical team at St. Louis Children's. As she gets older, she is learning why her daily medication is a necessity and which activities can harm her health. Mariah is taking ownership in managing her sickle cell disease and is excited to share her experiences with the world.
How CMN Funds Help Mariah and Kids Like Her:
Mariah has attended Camp Crescent, which offers a place where children who have sickle cell disease can meet other campers, join in fun activities and feel more confident about living with sickle cell disease. Thanks to donors like Children's Miracle Network, Mariah has been given the opportunity to meet other children who are like her, make new friends and learn she's not alone in her fight with sickle cell disease.