My son Ian was born with a mutation of the VRK1 gene, Spinal Muscular Atrophy with Pontocerebella Hypoplasia, a progressive motor neuron disease which affects the voluntary muscles that are used for crawling, walking, head and neck control, and swallowing, along with an unusually small and underdeveloped cerebellum. But Ian is so much more than his disease, and Chai Lifeline sees that.
Chai Lifeline has been in our lives for approximately 4 years. It is hard to imagine life without our Chai “family”. They have given us love and support in ways we never imagined. When we were first introduced to Chai Lifeline we were somewhat new into the medical complex world, struggling to find support for each one of us individually as well as a family. Our Chai “family” has been there as big brothers, big sister (to Ian’s twin, Becca), weekly dinners, fun and crazy activities, respite care, movie nights, personal football games, paintball in our backyard, Camp Simcha Special and hospital stays. Someone from our Chai “family” is always checking in to make sure that we are doing okay or to see what we need.
This past May 8th, Becca and Ian celebrated their B’Nai Mitzvah. Not only were there 100s of our family and friends there for their simcha, but so was their Chai “family”. Our Chai “family” came from Baltimore, New York and Israel. Everyone wanted to make their simcha extra special with ruach, dancing, and love. Ian’s counselor from Camp Simcha Special, helped him become a Bar Mitzvah, by saying the prayers and reading Torah for him. This day would not have been what it was without our Chai “family”.
On September 15, 2016, Ian passed away. Through the last week and the week of shiva, Chai Lifeline was here. Someone from the region, regardless of position, was here making sure we were as okay as we can be. We know Ian is no longer in pain and that is one thing that is helping all of us get through this. We know our Chai family will continue to be there for us just as we will continue to be there for them.