Help Bring Meg Home NOW
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Meg is a sweet 15 year old girl suffering with Juvenile Huntington's Disease, a rare neurological disease that is passed down by a parent with the same affliction. Her father is at the end stage of the disease, living at a nursing facility in the Berkshires where they have a special Huntington's unit. Unfortunately, no facility like this exists for a child under the age of 18.
On July 28, 2015, Meg was admitted to Baystate Medical Center with severe rashes, decubitus wounds, severe hematoma spots covering her body from coming in contact with objects due to the chorea (spastic movement) associated with this disease. Her weight was down to a concerning level because she wasn't able to consume sufficient calories. Huntington's patients require a minimum of 5000 - 8000 calories a day.
Because of limited outside interactions, her social and emotional well-being depend almost exclusively on myself, her older sister, and her service dog, Dixie. Since being at Baystate I have been searching for placement for her close to home so vital daily interaction can continue. OCD is another aspect of Huntington's. Meg will not eat dinner for anyone but a family member.
The search for appropriate placement began in August. Western Mass Hospital has a Huntington's Unit, but again, they do not take patients under the age of 18. We tried to obtain a waiver but that was denied by the Deputy Commissioner for the DPH who will not allow this to move forward.
I was presented with four alternative residential placements, however, none of them could accommodate her due to her developmental age, lack of necessary skilled nursing requirements, and/or complex medical issues.
I will not be able to bring Meg home until I can make the necessary accommodations to my home, which include extensive handicapped accessibilty modifications which will take time and extraordinary resources to complete. In addition, she will need 24-hour care for the remainder of her life, only some of which will be paid by insurance.
At this time, I've been notified that my health insurance will no longer cover her stay at Baystate and the discharge date set by Baystate, of October 27th, has passed. I have been left with no options as Baystate, based on their "protocol", has involved DCF.
As you can see, my daughter is stuck in a healthcare system that has failed her miserably. She deserves to be home with her family. JHD is a rapidly progressing disease, so to bring her home where she can get the care she needs surrounded by her family, is the ultimate goal.
I will be eternally grateful for any help I can receive that will allow me to bring her home as close to the holidays as possible.
On July 28, 2015, Meg was admitted to Baystate Medical Center with severe rashes, decubitus wounds, severe hematoma spots covering her body from coming in contact with objects due to the chorea (spastic movement) associated with this disease. Her weight was down to a concerning level because she wasn't able to consume sufficient calories. Huntington's patients require a minimum of 5000 - 8000 calories a day.
Because of limited outside interactions, her social and emotional well-being depend almost exclusively on myself, her older sister, and her service dog, Dixie. Since being at Baystate I have been searching for placement for her close to home so vital daily interaction can continue. OCD is another aspect of Huntington's. Meg will not eat dinner for anyone but a family member.
The search for appropriate placement began in August. Western Mass Hospital has a Huntington's Unit, but again, they do not take patients under the age of 18. We tried to obtain a waiver but that was denied by the Deputy Commissioner for the DPH who will not allow this to move forward.
I was presented with four alternative residential placements, however, none of them could accommodate her due to her developmental age, lack of necessary skilled nursing requirements, and/or complex medical issues.
I will not be able to bring Meg home until I can make the necessary accommodations to my home, which include extensive handicapped accessibilty modifications which will take time and extraordinary resources to complete. In addition, she will need 24-hour care for the remainder of her life, only some of which will be paid by insurance.
At this time, I've been notified that my health insurance will no longer cover her stay at Baystate and the discharge date set by Baystate, of October 27th, has passed. I have been left with no options as Baystate, based on their "protocol", has involved DCF.
As you can see, my daughter is stuck in a healthcare system that has failed her miserably. She deserves to be home with her family. JHD is a rapidly progressing disease, so to bring her home where she can get the care she needs surrounded by her family, is the ultimate goal.
I will be eternally grateful for any help I can receive that will allow me to bring her home as close to the holidays as possible.
Organizer
Kinser Cancelmo
Organizer
Springfield, MA
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