Help one of our own! Fundraiser for Baby Quinn
Posted By |
Message |
|
Help one of our own! Fundraiser for Baby Quinn
Now through Wednesday, October 31st, I will be hosting an Online Fundraising Trunk Show to benefit a local Long Islander, Baby Quinn. 100% of my commission from this trunk show will be going to the Linzer Family.
Shopping is now open: ht tp://www.vintagecoutureinc.net/shop/catalog.aspx?eventId=E10905&from=DIRECTLINK
Quinn is 5 months old.
Their daughter Quinn has a degenerative kidney disease called Niemann-Pick Disease and is now in palliative care. She has an incredible bucket list and I would like to do what I can to help her family reach those goals.
Niemann-Pick Disease Type A (NPA) is an extremely rare genetic neurodegenerative disease. The science of it is that Quinn currently produces less than 1% (0.5% to be precise) of the enzyme acid sphingomyelinase (ASM) required to metabolize a lipid (fat) called sphingomyelin. This lipid accumulates within her cells, eventually causing cell death and malfunction of the major organ systems (mainly liver, spleen, lungs and the brain).
The reality of it is that NPA leads to an early death, anywhere from 15months to 3+ years. And before she is gone, she will be taken from her family by way of severe developmental retardation and regression.
There is no treatment and there is no cure.
To learn more about Baby Quinn and her family, please follow their blog: http://teamlinzer.blogspot.com/
Shop to make a difference and help Quinn: http://www.vintagecoutureinc.net/shop/catalog.aspx?eventId=E10905&from=DIRECTLINK
Photo of Quinn by Forever Fireflies Photography. http://www.facebook.com/ForeverFirefliesPhotography
|
Posted 10/28/12 9:40 PM |
|
|
Potentially Related Topics:
Currently 266677 users on the LIFamilies.com Chat
|