A Little Faith

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After months of prayers and discussions, we determined that we didn't want her wish to be something that would be over in a day or a week. Lilly's wish had to be something that would benefit her everyday life. For over a year now we've been traveling weekly taking Lilly to receive aquatic therapy. We feel this has been one of her most beneficial therapies, and it's definitely the one that she loves the most! You see, at a very young age Lilly learned to swim through rescue swimming lessons - before she was diagnosed with Rett Syndrome. She has always loved the water, which is why we ultimately decided her wish would be for a therapy pool - something that would allow her to receive the therapy she needed in the comfort of our home.

Our hope is to keep Lilly's mobility up for as long as we can, as we know most Rett girls become wheelchair-bound by their teenage years, if not sooner. After months of waiting anxiously to hear, we received a phone call from our wish grantors saying that Lilly’s “Wish” was granted, and that the Endless Pool version was to be Lilly's wish. We were thrilled for her, and we could tell she was excited when she heard the news!

Being able to use the pool year-round, especially in the winter was a very important factor to us. Fewer than half the girls with Rett Syndrome can walk, we wanted to make sure she has the best chance to stay mobile. Lilly’s seizures are triggered by sunlight and she is unable to regulate her body temperature, so we knew this pool would have to be enclosed and fully climate-controlled. Make-A-Wish will be providing the pool, but we will need to provide the structure to house it.

With help from the contractors we decided the pool room needed to be located off the living room and master bath for accessibility. The proposed pool room will connect with a door leading from the deck into this new pool room. The cost for these types of enclosures varies anywhere from $60 a square foot up to $90 a square foot or about $45,000-55,000.

Our family wants to thank you in advance for being a part of our dream...something truly special, where together we will help make a precious little girl's "Wish" come true! God bless you!

Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops. It affects 1 in 10,000 live female births. The child will usually develop normally for the first six to 18 months of life, when a rapid regression phase sets in robing them of once-acquired skills. It affects every part of their functioning body and is described as cerebral palsy, Parkinson's, epilepsy, and apraxia all rolled into one devastating disease. Most girls experience life long motor issues, heart arrhythmias, breathing irregularities, scoliosis, digestive problems and a host of other symptoms including the possibility of sudden death. They lose purposeful use of their hands and are unable to speak. Most girls are confined to wheelchairs. It is a terrible disease that sneaks up on them slowly, the word they use to describe it is insidious. It robs them of so much and they become trapped in a body they can no longer control, but there’s hope!

We will be donating a portion of the proceeds towards Rett Research.

https://reverserett.org/

A video about her walk. https://youtu.be/yAeW54D9InI

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https://www.facebook.com/CureForRettSyndrome/

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