I have not updated this account like I should. My last post was about possible brain surgery for Isabella. Since our UCLA visit, our lives changed drastically. We finally got a diagnosis through genetic testing with results for CDKL5 (cyclin dependent kinase like 5). CDKL5 is a ultra rare genetic disorder that affects the protein level in the blood that is esstenial for normal brain development. With this disorder, Isabella suffers from everyday seizures, immune deficiency, GI issues, and requires around the clock nurses at home. She is also wheelchair bound and has multiple types of equipment to help support her as she can not sit on her own (yet!). Because of all of the appointments and random emergency hospital stays we encounter, I am unable to work right now. Being a one income family has been tough, we lost our car because we weren’t able to keep up with the payments. Right now, we only have my Kia Optima and I must say, getting Isabella’s wheelchair in and out, is a difficult task in its own. We have put a lot of thought into what car we need to fit Isabellas needs. After doing some research and talking to other special needs families, we feel that a wheelchair van will be best for Isabella. Some of y’all who know me, know I’m a petite gal and Isabella is getting too heavy for me to carry. If we have a wheelchair van, I won’t have to worry about picking her up and buckling her into a car seat. The van will allow us to push Isabella in her wheelchair inside of the vehicle and lock her chair into place. Not only will this make our lives easier as Isabella grows, it’ll allow us to utilize Isabellas wheelchair like we should. Since the wheelchair is such a tight fit in my car right now, we don’t even bother taking it out. We only use it at home. Now that our little girl is almost two, she wants to be sitting up in her wheelchair and able to look around. Her regular strollers do not have enough support for her to do those things, but unfortunately we don’t have a choice but to use her regular stroller when we are out and about.
We are looking and planning on getting this van once we get our income taxes, however we will need help to cover some of the rest.
We don’t like asking for money but we realize this is something our daughter needs and deserves.
Any amount helps.
If you are unable to donate at this time, please continue to share our story and continue to keep us in your thoughts and prayers. ❤️
We truly are so thankful and blessed to everyone who has helped us since our last post. I cannot thank you enough for all the kind words and donations.
- JP Ayres
- Emily Rivera
- Tres Stallard
- Jarred Sumpter
- Shea Ogburn
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more