Meaghan Cancelmo, 15, has been in hospital for over 100 days suffering with Huntington's Disease. With no cure, the doctors have done all they can to help her up to this point.
However, Meaghan now needs a long term solution.
"She literally can't do anything. You have to feed her, bathe her, dress her, and brush her teeth," her mother Kinser Cancelmo explained.
Meaghan's speech is just about gone. She has little control over her movements, can't walk, and because her metabolism is constantly working, she must consume a minimum of 5,000 to 8,000 calories a day just so she doesn't lose weight.
Meaghan needs total care. She's battling juvenile Huntington's Disease, an incurable brain disorder that causes nerve cells in the brain to die.
"It causes progressive problems with the way your body and mind works," said Dr. Mary-Alice Abbott, Chief of Pediatric Genetics at Baystate Medical Center.
It's a disease passed down genetically.
"It's passed through families and if you have the condition, each of your children is at a 50/50 risk for having the condition," Dr. Abbott said and added that in children, the condition can have features that are more severe and it can progress faster.
Kinser noted that the disorder has ripped her family apart.
"I've lived it with my husband until I could no longer care for him and now I'm living it with my daughter. If I can say this - my husband was a piece of cake compared to what I'm going through with my daughter. It is a complete and absolute nightmare," Kinser explained.
Meaghan's father is at the end stage of the disease, living in a nursing facility in the Berkshires where they have a special Huntington's unit, but unfortunately, no long-term care facility like this exists in the area for a child under the age of 18.
Kinser has felt frustrated and lost with no place to go. She wanted to share her story in hope that one day there will be a place for a child with Huntington’s disease to go for long-term care.
"She didn’t ask for this, it’s a horrible monster of a disease, I want to do anything I can do to raise awareness,” Kinser said.
Since we met with Meaghan and her mom, unfortunately, Meaghan has taken a turn for the worse. She is in a coma and everyone at Western Mass News is keeping the Cancelmo family in our thoughts.
Her mom has set up a "Bring Meg Home" GoFundMe page to make accommodations for her home in hopes that she gets better.
Copyright 2015 Western Mass News (Meredith Corporation). All rights reserved.