Help Diane Get Respite
Donation protected
My name is Melissa and I'm fundraising for my friend Diane Gerlach. Diane is more than a friend to me, we're both members of a small community of people caring for family members with the rare neurogenetic condition called Angelman Syndrome.
Angelman Syndrome affects approximately 1 in 15,000 births and in most cases is a completely random, de novo mutation. It causes severe epilepsy, other neurological issues like tremors, dyspraxia, lack of speech, insomnia, and developmental delay. Individuals with the Angelman syndrome need care for their entire lives.
Diane is not only a mother to her adult son Connor, who was born with Angelman Syndrome, she is his primary caretaker. She does not have any help with him in the home currently and lives alone with him. There is such limited access to day programs and PCAs for help in the home at the moment because of the pandemic and the repercussions of it, that Diane has had very little help with Connor over the past couple of years.
Diane desperately needs a break. And this is the first time in the decade or so I've known her that I've ever seen her express the need for a break. She is an incredibly strong person, loving, and completely giving of herself to her son.
Anyone who is a caregiver knows that respite and a break to recharge one's batteries are absolutely necessary in order to keep going. I know this first hand, because I also have a son with Angelman syndrome. However my son is younger, is still in school, and we are very fortunate to have PCA who come to our home and access to respite. Diane does not have these things.
I started this fundraiser to try to raise money to let Diane take a vacation to get away and recharge her mental and emotional batteries, which is so important when you are the primary caretaker of a disabled person. Part of the money will be to take the vacation, and part of it will be to find a reliable caretaker for Connor while she is away.
We all deserve a break, and I know if our roles were reversed, Diane would be doing the same thing for me.
Let's give Diane a break!
Organizer and beneficiary
Melissa Grakowsky Shippee
Organizer
Warrenville, CT
Diane Gerlach
Beneficiary