Help #AbbyStrong Fight Childhood Dementia

Abby has Niemann Pick Type C. It's an ultra rare and fatal genetic metabolic disorder with approximately 500 known cases word wide. Commonly referred to as Childhood Dementia, NPC has no cure but there is incredible efforts being made in the scientific community. It's onset and progression are varied to the individual with a life expectancy based on age of onset. The earlier the onset the worse the prognosis. With rapid diagnosis can come better outcomes for current treatments and a better understanding of the disease in general. That's were you can make a real difference. Help us spread awareness while helping us to give her the best odds!

Abby is such a sweet spirited little girl. She loves without limit and has such a vivid imagination. She loves Frozen and Spirit. Her favorite things to do are play pretend mommy, dance and sing. Her symptoms began at birth with blocked bile ducts, an enlarged liver and enlarged spleen. It was a long diagnostic journey filled with dangerous misdiagnosis and painful testing but on her 4th birthday we received the devastating news by phone call. Despite her earlier onset of symptoms she is beating the odds and every year from here on out will be a cherished gift. 

Abby is a fighter just like her Mom, Dad and big sister. This has thrown us for a loop financially and I'm trying to prepare for the road ahead because we will not give up.

I will do whatever it takes to help Abby live her BEST life and have every chance of survival.

She has therapies throughout the week and we are going to start biweekly spinal infusions (lumbar punctures) of a drug that can help save her life by removing the buildup of toxic waste from her cells. It isn't a cure but it could help us keep her thriving until a cure is developed.

Whatever you can spare will be helping us to offset the costs of treatments, therapies and devices that will help Abigail live a longer fuller life. Out of pocket costs have been and will continue to pile up and do their best to bring us down but we won't let them. She has had and will continue to have a lot of travel expenses as she goes to and from her providers in Philadelphia, Bethesda and Washington DC and possibly Chicago. 

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