Arlee

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Arlee—as written by her parents. 

 

Arlee is a sweet and spunky six-year-old girl. She loves spending time with her sister, brother, and cousins. Arlee loves to sing, dance, and play with her dolls. She is a HUGE Disney fan! Arlee loves to be silly and make other people laugh. She is starting to get really good at telling jokes. Arlee actively participates in her church and enjoys swimming, reading, and dancing. Arlee loves camping, watching movies, playing at the park, and going on bike rides.

 

Around age two, we noticed that Arlee was behind on some of her gross motor skills. We started physical therapy, and that seemed to help for a short time. Around four, Arlee was significantly delayed in her gross and fine motor skills. We started seeking help to figure out why. Arlee had many genetic tests and saw many doctors. After about two years, we finally found out what was going on. Arlee has Friedreich's Ataxia. This is a rare, debilitating, life-shortening, degenerative, neuromuscular disorder. It caused Arlee to have many health issues. Arlee currently has mild scoliosis, mild cardiomyopathy, and moderate muscle ataxia. She has sensory and motor nerve damage. She will require follow-up visits by many specialists for the rest of her life. Only about 5000 people have this diagnosis in the US and approximately 20,000 worldwide.

 

Little things that we take for granted as being mindless, are challenging for Arlee. Zipping up a coat, opening a door, getting into the van, going up the stairs, running, and jumping are just a few things that are significantly more difficult for Arlee than kids her age. She hardly complains (she complains more about what’s for dinner!) Arlee has to have many routine doctor appointments, and blood draws. She is so strong and brave! She has never been able to ride a bike. Still, now that we know what is going on and we are reaching out to our community for assistance, she is so excited about the possibility of getting a bike she can use and feel safe on. Arlee is excited to be able to ride her bike with family and friends and be able to keep up with them. This bike will give her more independence and confidence. She said, “ Now I won’t need Mom’s help to ride a bike!” In the future, Arlee said she wants to be a chef, artist, actor, singer, and gymnastic girl

 

Myles and I, Arlee’s parents, feel so blessed that many people have offered to help Arlee. Once we are able, we would love to be able to provide funding for other children who require a bike or other mobility devices. We would also love to help pay for travel expenses for a family with a child who needs to go to a hospital far from home.

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Congrats on your new bike, Arlee.  We are so happy for you and your family to have the opportunity to more fully enjoy the outdoors!

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