Jaylianni’s Accessible Van

Hello family, friends and neighbors! For those who do not know about Jaylianni’s condition. She was diagnosed with ‘Rett Syndrome’ shortly after her 2nd birthday.
Rett syndrome is a rare non-inherited genetic postnatal neurological disorder that occurs almost exclusively in girls. It affects her ability to speak, walk, eat, and even breathe easily. What comes so natural to others is a struggle for her.
 
Jaylianni’s first year of life was  normal. She learned to sit up and crawl. She would hold onto her sippy cup and bring food to her mouth as any child would. She had simple words in her vocabulary: mama, dada, tata, nana etc. We first noticed that she was tapping and bringing her hands up to her mouth. She also started to walk on her tiptoes. We both thought it was something she’d grow out of.  
She did not grow out of it..

It seemed to happen overnight. She started to tap and wring her hands together. She then lost the function of her hands. She could no longer hold her sippy cup without assistance, she could no longer feed herself. And all those sweet words were gone. She became off-balance with her toe-walking and would fall easily if not supervised. She frequently has breath-holding spells which causes her belly to distend. Sleeping also became a difficult task. It seemed she never got tired no matter how long she’d been up. This caused so much strain on both of us with school and work. 
After her diagnosis, we immediately started her with at-home therapies (speech, developmental, physical and occupational). She was also provided therapies at school. We did everything in our power to make sure she was getting all the help she needed. 


Through CPS, she has received a communication device (Tobii Dynavox) which uses eye-gaze technology that allows her to communicate. We have been so blessed to be able to communicate with her and understand her needs and wants as she no longer has the ability to speak.
(Screenshot of Jaylianni telling us what was bothering her)

We were then referred to Shirley Ryan AbilityLab where we got her fitted for AFOs (Ankle and Foot Orthosis). This was to help her walk flat on her feet. She is doing amazingly well with them. However, once the AFOs come off, she’s back to walking on her toes. 

She is now 7 years old at 52 lbs and growing more by the minute. We are in the process of getting her an adaptive stroller because she has outgrown her standard stroller.  It is becoming difficult to transport her into our cars as she is getting taller and heavier.  

The van we need has an auto access seat. The seat rotates 90 degrees extending from the vehicle and lowers to an appropriate height so that she can board easier. Jaylianni will also need room for her adaptive stroller, Tobii & mount.  This accessible van will highly benefit Jaylianni. We couldn’t afford to do this on our own which is why we need any help we can get. 

Any donations are very much appreciated and we would like to thank you all in advance. PLEASE SHARE! God bless!