Emma
Hi, my name is Morgan and my daughter Emma has a rare genetic disorder called Juvenile Huntington’s Disease (JHD) is a rare inherited neurological disorder. She got diagnosed earlier this year at the age of 4 and unfortunately she has the highest count of CAG repeats her neuro doctor has ever seen 170. The symptoms are coming on quickly. On top of having this disease she also has Ataxia. This Ataxia is a neurological sign consisting of a lack of voluntary muscle coordination, resulting in uncoordinated movements, balance issues, and problems with gait, speech, and eye movements. As we’re facing daily battles unfortunately she needs adaptive equipment to help her with her ADLS.
This carseat that the national seating mobility recommends this car seat. With all the additional equipment she needs added to the seat the total cost is $3,500. We are not able to travel right now more then 10 minutes without her being very uncomfortable in her carseat now. She has tremors that constantly makes her makes her move and shes so uncomfortable. We tried everything possible to make her comfortable but the adaptive seat is the route we need to take but with everything else the cost is so expensive. Her doctors are all in Cincinnati and with traveling being so difficult we have made her appointments all telehealth until we can make traveling easier. I know times are rough right now for everyone but I decided to make this Go fund me to help my daughter be as comfortable as possible. Every dollar can help right now and I truly appreciate it! If you cant donate please share.
I also have cashapp and venmo.
cashapp- Morganlynn2022 and venmo- Morganfreeman2025
https://www.gofundme.com/f/support-emmas-comfort-donate-for-adaptive-car-seat
JHD Initiative 