Meet Rachael from New Jersey, United States. This gorgeous young lady battles Niemann Pick Type C with help from her supportive dad Steve & tenacious mom Debbie, one of our Board members. Debbie and Steve searched for years to find out why their amazing teenage daughter began to go through some profound personality changes and lose the ability to do the things she loved to do. The answer came in the Fall of 2012, Niemann Pick Type C. The disease will eventually claim Rachael's life well before her time. She will not have a family of her own or live independently. Instead she will continue to teach her parents what it means to perservere and love without question.
Helping others understand and reach their fullest potential is in Debbie Kaflowitz's blood. A retired school teacher, she has taken to educating and engaging members of the Niemann Pick community. Debbie recognizes that children who onset in their teens and as early adults have challenges that are unique to that stage of life. She is also a mom who understands what it means to suddenly learn that the child you have raised is now the one you will become a caregiver for. Connect with other families in your situation by clicking the button above and connecting with Debbie.