14 year old Angel
In 2006, my beautiful Brittany was diagnosis with jhd..
After Her diagnosis, I began taking the steps to educate the people that were around my daughter on a daily basis such as school teachers and family members. I was lucky enough to have some of the staff from the HDSA -new England come into the school and speak about the different stages of the disease and what would need to be done to accommodate her needs. I also had all family members and also aids working with Brittany certified in CPR and First Aid. Brittany was followed by her Pediatrician,Her Neurologist and his team, as well as the Huntington’s Center of Excellence. As the disease progressed she was unable to attend school due to exhaustion,swallowing problems (even with thick-it),and more and more seizures. She still had Pt , OT and speech just at home. Then the fun began with the insurance company they started to deny coverage for every day supplies that we needed to care for her which was absolutely horrible…
But they do it as if isn’t hard enough. Brittany then begin having problems with aspiration, It was then time for a feeding tube. After getting her feeding tube,things were better for awhile….
But It didn’t last long,
Brittany passed away in 2010.
We now have a fund set up in memory of Brittany, to help other children with jhd.
Please take comfort in knowing that the fund is here for you and your family.
If your child needs anything now of in the future that we could help with please let us know.
She was a very happy little girl always smiling.Her favorite colors were pink and purple.
She loved rainbows and butterflies.
She loved Music ..Her Favorite music was Country …She loved Kenny Chesney!
And Loved Strawberry Shortcake Dolls.
But Most of all she loved being with her Family and Friends.