A Long Island family, facing the prospect of the death of their 9-month-old daughter, has created a bucket list of sorts to maximize her brief life.
Quinn Linzer suffers from Neimann-Pick Disease Type A, which causes the brain and body to regress. The family learned of Quinn’s disease when she was just 3 months old, with doctors saying she is not expected to live past her first birthday.
Among them are a visit to FAO Schwarz, a trip to Disney, a toe-dip in the ocean, tea at New York’s Plaza Hotel, time spent swimming with dolphins, and a dance with daddy.
Fundraisers have been held, online and elsewhere, to help the family of five, including Quinn’s two brothers, raise enough money to make some of the dreams come true.
Even as the family’s doctor had encouraged the Linzers to take Quinn home and give her love, saying nothing more could be done for her, the family was inspired to give their daughter the fullest life possible. Mom Eileen Linzer shared photos of the family enjoying time together with Quinn on a blog she created, called Team Linzer.
As it says on Quinn’s List, her family is on a “mission to give her as wonderFULL a life as we could possibly give her.”
UPDATE from the Linzer family: Our intention behind the blog and an article in a local newspaper (complimented by a brief tv interview by their affiliate news station) was to bring awareness to an incredibly rare, incredibly tragic disease. The "story" for the media seems to be Quinn’s List. This is a list created by family and friends who wanted to give our baby the best life anyone could hope for, even as it will be cut very short. No. 1 on the list is to simply be loved; other items include playing with puppies, dip her toes in the ocean, sit on Santa’s lap and swing on a swing. The more ambitious activities are based on Quinn’s mood and health and are adapted to her and the boys.
Fundraising is not something we have undertaken. Our family and friends hosted a benefit on our behalf so that we need not worry about anything on top of everything else we’re dealing with, including the loss of my income. That benefit occurred more than a month ago; no where on our blog or anywhere will you even find contact information nor a "donate" button – we are not looking for money or handouts from anyone.
We love our daughter and sons fiercely and treasure every moment we have with her and as a complete family.