Declan is diagnosed with TARP Syndrome, which is a rare genetic condition that mainly affects boys and is caused by changes in the RBM10 gene on the X chromosome. The syndrome itself is a spectrum, varying in how it presents itself in each case.
It is marked by several health problems, including clubfoot (a twisting of the foot), heart defects, issues with jaw and palate development (like a small lower jaw and cleft palate), and abnormal blood vessels. These issues can cause breathing and heart problems, making the condition very serious, especially in infants. Early diagnosis and care from a team of doctors can help manage the challenges caused by this condition.
As Declan gets older, his family has adjusted to how they care for him in day-to-day activities. Maddie’s Miracles saw the opportunity to help by providing this family with essential pieces of medical equipment to make Declan and both his parents lives a bit easier. Maddie’s Miracles was able to provide Declan with a shower chair, as well as an adaptive chair called the Go To Firefly Seat, which is a lightweight, portable, postural support seat designed for kids with disabilities.
Stefany, one of Declan’s parents told us: “These pieces of equipment have aided in Declan’s day-to-day activities in so many ways. We are able to have him be a part of the dinner table when we go out to eat, as it provides him with the amount of support he needs to sit at the table. With bathing each day, the shower chair has given a whole new outlook and has put the fun back in bath time!
Life before these pieces of equipment was not easy, nor were we able to have Declan be an active member of the family when out and about. He is now able to swing at parks with other kids his age, and his is able to comfortably have a bath with the support he needs.
We are forever grateful for Maddie’s Miracles and cannot say enough how wonderful the entire process was to get Declan the equipment he needed. Thank you so much for the generosity!”
Maddie’s Miracles continues to seek out families of children with severe disabilities who could use assistance to make their daily lives easier. If you, or someone you know could benefit from our mission, please visit our nomination page (https://maddiesmiracles.org/nominate-a-family-2/) and submit an application for us to review. We will be in contact with you shortly!