Meaghan (Meg) Cancelmo
15 year old Angel
We got Meaghan a service dog when she was 12. Dixie was her best friend as was her sister and mom. The best thing we could’ve ever done for her. Meaghan lived a fairly normal life until age 14. Right before she turned 15, she fell down our stairs and that is when all of her neurological problems went into full gear. She was a sweet 15 year old girl that inherited Huntington gene from her father. She was clinically diagnosed with the disease at age 10 by Center of Excellence at MA General Hospital Boston, MA., I believe her many years of struggling academically, as well as being diagnosed with ADHD, in reality, misdiagnoses.
She started experiencing such severe issues that she was admitted to the hospital on July 28, 2015. She remained in the hospital where several doctors continually tried to find medicines that could help ease some of her issues such as, severe itching, sleeplessness, skin ulcers, bruising, while also trying to get her to consume massive amount of calories per day that she needed so that she would not lose weight. Keeping weight on the patient is key in trying to keep some symptoms of the disease at bay.
There are less than 5 facilities in the state which can accommodate an individual under age 15. Meg was 15 years old, it was virtually impossible to find a facility close to home that could handle the symptoms and care of JHD. We searched and requested the support of many to help us find an appropriate placement for her where we could still see her daily. Her entire world consisted of her family and her service dog. Most shied away from the fact she required so many medicines, needed one to one assistance, as well as other idiosyncracies. The struggle was daily. It was clear from the hospital’s push to discharge, they wouldn’t accommodate her, even though she had nowhere to go.
Through a GoFundMe account and help from many wonderful people, and several government agencies, work was in the process of getting accommodations made to my house to bring my girl home. I could see there was a light at the end of the tunnel. Sadly, on the evening of November 18th, I received a phone call from the hospital, stating Meg had gone into cardiac arrest. November 23rd, she lost her battle and gained her angel wings.
The whole 4 months was a nightmare of fighting, politics and doctors not knowing how to help my poor baby. The direct care she received from the nurses was phenomenal. Other than that, I could’ve killed everyone. This disease is a horrible, terrible, cruel way to live, for anyone, but, especially for our children.
My goal , now, is to raise funds to assist the University of California, Davis Campus, with their continued research, as well as to help families with terminally ill children obtain equipment or other opportunities not covered by insurance.
Through Meaghan’s Website
http://www.megsfightforacurejhd.com/
About Meaghan
Meaghan was “ecstatic” about getting the dog, a Labrador retriever. She Loved Animals! Especially Dogs, Dixie was her best friend.. She also loved Disney and Boston and NYC! She also loved the color pink. March 29, 2000-Nov 23, 2015.
JHD Initiative 