"Everyone should go to a baseball game ... play with (and get licked by) a puppy ... do Disney ... watch a sunrise ... love and be loved as much as possible, each and every day."
These are just some of the experiences on 5-month-old Quinn Linzer's lengthy To-Do List, but while most babies have their whole life ahead of them, Miss Quinn, as her mother Eileen calls her, has only her childhood to live a lifetime.
At just three months old, Quinn, whose family lives in Lynbrook, was diagnosed with Niemann-Pick Disease Type A (NPA), an extremely rare genetic neurodegenerative disease that affects 1 in 250,000 children.
Writing on her blog, "Linzer, Party of Five," through which she chronicles her family's journey coping with Quinn's illness, Eileen Linzer explained:
"The reality of it is that NPA leads to an early death, anywhere from 15 months to 3+ years. And before she is gone, she will be taken from us by way of severe developmental retardation and regression. There is no treatment there is no cure."
Eileen and her husband Brett, who also have two young boys, have decided against stem cell treatment and opted instead for pallative care for their daughter, so that they will be able to make the most of the limited time their family has with her.
Their mission, Eileen explains, is "to give her as wonderFULL a life as we could possibly give her."
To support the Linzers in this endeavor, several of their neighbors have organized a multi-family garage sale and bake sale that will take place this Saturday, Oct. 20, at 208 Union Avenue from 10 a.m. to 3 p.m. Tickets ($25) will also be available for purchase to attend Quinn’s benefit on Jan. 19, 2013 at Lily Flanagan’s in Babylon and donations will be accepted.
Alll the funds collected will be used to "provide Quinn and her family with happy memories to last a lifetime."
If you cannot attend, but wish to donate please email Michelle Mastrande at firstname.lastname@example.org.