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Inspired by Miracles: Meet Elyse

After having an unusual reaction to a standard hearing test in the hospital after she was born and missing some expected milestones, Elyse was initially diagnosed with cerebral palsy, but the diagnosis just didn’t feel quite right to Elyse’s family. However, they were still grateful that Elyse was getting the care she needed, including tests, doctor visits, therapy, and equipment.

Miracle Child Elyse smiling
Miracle Child Elyse

The summer before Elyse turned two, the results from her genetic tests came back, showing the cause of all her delays – PDCD. Pyruvate Dehydrogenase Complex Deficiency, or PDCD, is a rare genetic condition that causes significant developmental delays and muscular differences. As the family learned, cerebral palsy is just one feature of this condition, which helped everything to fall into place and finally make sense.

Elyse has needed hearing aids, glasses, and special equipment to help her walk, but she has continued to thrive despite the many challenges she faces. Elyse attends multiple therapy sessions every week, including speech therapy, physical therapy, occupational therapy, and music, but music is Elyse’s best motivator! For Elyse, it provides healing and improves her self-expression, communication, and attention.

Cruising toward peace of mind

Around the same time as her diagnosis, Elyse’s family discovered that her left hip was dislocated, requiring her to undergo muscle-lengthening surgery and wear a hip spica cast for three months. Elyse’s mom, Amanda, says that they were so worried about the surgery going well that when it came time to leave, they realized they didn’t have a way to get Elyse home safely! Thanks to CMN’s Patient Assistance Fund, Elyse’s family was provided with an adaptive car seat that is specially designed for pediatric patients with hip spica casts.

Elyse, then a toddler, sits in her adaptive car seat. She is wearing a hip spica cast.
Elyse in her adaptive car seat

“Just knowing that I had a piece of equipment to keep her safe, to keep the cast safe, to keep everything safe, meant the world to me,” says Amanda.

For any family, having to purchase unexpected equipment to keep a child safe can be a burden. For families like Elyse’s, who have faced a lifetime of medical needs and costs, knowing that CMN is here to help brings peace of mind. That’s why CMN raises funds to support the Patient Assistance Fund, which benefits families like Elyse’s.

In addition to adaptive car seats, the fund helps to provide families in need with food boxes and meal coupons, clothing vouchers, gas cards and taxi fares, support for prescription medication, and durable medical devices. These services help to ensure that families who are dealing with a sick or injured child can focus on what is truly important—their child’s health.

The mountains and valleys of life as a Miracle kid

Today, Elyse is a spirited seven-year-old who loves listening to songs from the Alvin and the Chipmunks movies while she is exercising or playing, and she loves reading books that follow the alphabet. She also enjoys having play dates with her friend, Miracle Child Joella.

Unfortunately, like so many other kids during this cold and flu season, Elyse was hit hard this fall by RSV, or respiratory syncytial virus. Viruses such as RSV can cause even more complications for kids with complex medical conditions, and Elyse’s muscle strength was greatly affected. However, her mom says that she is finally turning a corner and gaining back some of her upper body strength.

“I have seen her get up on her hands and knees to get ready to crawl for the first time since she’s been sick. I have been so proud to see her standing to play and walking with less support.”

Miracle Children Elyse and Joella on a playdate
Miracle buddies Elyse and Joella

The Gift of Giving Back

Elyse and her family continue to give back and support other families like theirs. Miracle Mom Amanda co-leads the Healthy Kids Running Series and helped to create the Challenger Division so that children with different abilities can enjoy the same activities as their peers. CMN provides scholarships so that other Miracle Families can participate.

Elyse's brothers, Elyse, and mom Amanda pose on the winner's podium at the Healthy Kids Running Series
Elyse’s brothers (left), Elyse, and mom Amanda (right) at the Healthy Kids Running Series

In addition to funding the special equipment that helped to keep Elyse safe and thriving, your gift helps kids like her by supporting programs like Child Life, art therapy, and much more.

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