Goal:
USD $20,000
Raised:
USD $130
My name is Brandy, and I am Certified Occupational Therapy Assistant. As a new grad and fresh COTA, I was introduced to Ms. Hayley Jane in 2022 and have had the pleasure of being her treating OT ever since! This beautiful girl has a variety of medical diagnoses including PHTS (PTEN Hamartoma Tumor Syndrome), and BPAN (beta-propeller protein-associated neurodegeneration). She was also diagnosed with a very rare genetic mutation that will cause her to store iron deposits in her brain and ultimately pass away from the build up of iron. This mutation also causes Hayley to have Lennox-Gastaut Syndrome. She is truly a warrior that continues to smile and be her happy self even though she experiences epilepsy or seizure episodes, dystonia (uncontrollable muscle contractions), Parkinsonism which can be tremors, shaking, stiffness, problems with muscle tone and movements, along with the gut and intestinal issues that have come along since I’ve been seeing her.
Hayley lives at home with her mom, older brother, and younger sister. She is lucky enough to have a day time nurse 4-5 days out of the week, and a night nurse that comes a couple nights out of the week. Since they are having issues getting all of Hayley’s nursing hours staffed, mom is her main provider/caregiver. With mom being the main caregiver for Hayley and her sister Hazel who is also medically complicated, mom’s schedule is full of doctor appointments, therapy sessions, along with errands and medication pick ups, ultimately leaving her with very little time left in her day. While there is older brother there to help out when necessary, of course majority of it falls on mom, leaving her unable to work and the family living on a fixed income.
As a result of her gastrointestinal intestinal issues, Hayley had a total colectomy, which lead to sepsis and Hayley being intubated for 2 weeks, and spent months in the hospital. So after the past year and a half in and out of the hospital, along with the extended stay just a few months ago, unfortunately the family has fallen behind on some of the finances. So I am reaching out to help them get caught up, and ultimately try to get Hayley in a wheelchair accessible van to make it easier and more comfortable to travel, since she is now a total assist when transferring from wheelchair to car. Mom also has to lift the wheelchair into the trunk of their current van, after lifting Hayley in. An adaptive van would not only help with the safety and care for the whole family, but I think it would also reduce Hayley’s pain because it would be less movement (from the multiple transfers), and they would be able to easily utilize Hayley’s peapod chair and roll it into the adaptive van on her bad days, or long appointment days when she isn’t able to sit up for the entirety of the outing. Any would help to assist the family to get fully back on track, and HOPEFULLY get them the adaptive van they truly need for Hayley Jane.
I hope you get better God is praying for you
🙏💗
I know your struggles and hope that you can get this Van for you guys. You are an incredible mom and deserve to have this take make some of your struggles a little easier.
Trying to help my granddaughter
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