PPOD Chair for Hayden!
A little over a year ago, we came to our friends, families, supporters, school friends and even strangers to ask for help. You all turned out in amazing numbers to help us get Hayden a travel wheelchair! We couldn't be happier! The chair is great and really helps us get around either to school, the mall or even an amusement park! We were lucky enough to also be able to get a few accessories for the chair as well as a travel seating system to use in restaurants etc! It is essential. We use it every day! Especially, since Hayden has lost the ability to walk almost entirely since then. So again, thank you! From the bottom of our hearts.
So, we are back, to ask for a little more help. Currently, since Hayden can no longer sit up unassisted, she spends a LOT of time in her "house" wheelchair. It is great for eating and getting her tube feeds, but, we are concerned about her sitting in it too much (think pressure sores, etc) Also, due to not having good muscle control, she kicks and bangs her legs and feet over and over into the steel frame. (bruises!) I recently came across a device made just for this, for kids with muscle problems to sit supported in a soft environment.
I am asking for help to purchase a PPOD chair for Hayden, and if we exceed our goal, some accessories like foot prop/rest and maybe an attachable activity table.
The chair alone is $1800.00 (I know!) But, it may offer her hours and hours of comfort and protection.
Please, help if you can, and share this fundraiser too!
For those that are not familiar with Hayden's disorder and ongoing medical needs, read below:
After falling and breaking her elbow at age 3, Hayden started displaying worrying symptoms. After lots of tests and appointments, a genetic test revealed that Hayden had a disorder called PKAN (Pantothenate Kinase-Associated Neurodegeneration) a form of NBIA (Neurodegeneration with Brain Iron Accumulation) ( http://www.nbiadisorders.org/).
It is a fairly rare disorder in the US (a literal 1 in a million) but it is believed to be a bit more common in Guatemala, where both of her birth-parents are from.
It is a progressive, degenerative and incurable disorder, caused by a gene mutation, that mainly affects her control over her muscles. It causes dystonia, which causes the muscles to contract and spasm involuntarily.
Currently, this affects Hayden’s arms, legs and back mostly, but also sometimes her neck. It forces her limbs to move or to lock in unnatural positions. She has fully lost her ability to speak. Her symptoms can range from good to bad over time, but is progressively worsening. Currently, the dystonia is preventing her from walking, sitting unassisted, and eating safely. Symptoms can get better at times, and then worsen again. It is unclear as to why this occurs.
Due to the uncertainty of the disorder and its progression, we can only try to anticipate Hayden’s needs. There are several other treatment options down the line that we will use as the needs come up.
She is in very good spirits most of the time, she’s taking the challenges like a champ. She loves school, loves her friends and her family. She’s VERY popular at school (whew).