Ride to Give - Help Ali Get Her Complete Wish
$4,515 Raised
135% of $3.4k goal
300 contributors
0 days left
Ended Apr 12, 2014
Make a Wish is granting Ali a wish, and her wish is to go to Disney World with her whole family. Please read her story below and help us include her 2 siblings and grandparents that live outside the home. More ...

Ali is a beautiful 9 year old girl with a very rare genetic/neurological disease called PLA2G6-Associated Neurogeneration(PLAN)/Neuroaxonal dystrophy (Atypical NAD). It causes iron to accumulate in the brain. As the iron accumulates she will lose many motor and cognitive skills and also muscle control. This is a progressive disease that is incurable, has no treatment and in all other cases has progressed to death.

Ali has had a walker since Sept. 2013 to help her walk and AFO braces since January to further help her walking. Ali has gone through regressions causing her muscles in her legs to get even weaker. In February she had her 3rd regression since Sept. which caused the doctors to recommend a wheelchair for long distance walking. The walker is no longer enough except for short distances, because without her braces she walks in a sitting position as her hamstrings are not strong enough to support her. Her legs tire very easily as Ali suffers from both loose muscles, and muscle spasms. Her last regression started affecting the muscles in her arms. Ali has some autistic behaviors, pervasive developmental delay and is developmentally delayed at around age 3-4. She has also started developing slight OCD which may progress to major OCD later. 

There is not a timeline for the disease since it is so rare, so Ali's family has no idea of when regressions may happen or how bad they will be. They do know that the next regression she has will most likely put her in a wheelchair permanently. Lately she has started having episodes of confusion and appeared to have no idea what was happening around her or where she is. She almost walked into the street during one of these episodes and this could be a precursor to seizures which is another symptom of this disease. Ali is currently receiving speech, occupational and physical therapy as well to try and help keep her muscles working as much as possible.

Make a Wish is granting Ali a wish, and her wish is to go to Disney World and meet the princesses, particularly her favorite...Cinderella. She and her parents and 2 little brothers will stay at the Give the Kids a World village and receive theme park tickets for 5 days. Ali has 2 older siblings who do not live in the house full time therefore Make a Wish will not pay for them to go on the trip with her, but Ali really wants to go as a family.

Here's where Ride to Give steps in:  Our goal to raise funds so Ali's 2 older siblings and one set of grandparents can join them on this trip, including park tickets, hotel, and food, etc.

Please help us give Ali a true trip of a lifetime with her WHOLE family by sharing her story and donating at the link below. You can read more about Ali at With Courage and A Smile: Ali's battle against NBIA, and more about Ride to Give and what we do at ridetogive.com.

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