I can't believe its been a full year since Liv's last campaign that so many graciously helped us with. Liv is turning 4 on May 1st! She absolutely loves the princesses and songs in Frozen, so that's her birthday theme this year! :)
What a past year this has been. To watch our little girl lose a lot of her ability to communicate and do her best to "hang on" has been so challenging. Earlier this year, we moved out to California so that Liv could be part of a clinical trial. We are thrilled to get this chance, and we have HOPE for Liv. The reality though, is that we don't know if this will help Liv, and we still need a CURE. This is going to be a lifelong fight for Liv. That's why we are doing this fundraiser again this year...to celebrate Liv and to fund research so we can find a CURE or a treatment that completely stops Sanfilippo.
Sanfilippo Syndrome (MPSlllB), also known as 'Childhood Alzheimer's, is a disease that begins to appear in the preschool years and causes physical and mental regression due to a missing enzyme used in breaking-down naturally occurring wastes. Toxic storage builds up in the brain and begins shutting down all critical functions. We've seen some of the impact this past year on Liv. We don't want to see any more.
Without a successful treatment, these terrible things happen:
--loss of language
--dementia like confusion
--not be able to walk and be in a wheelchair
--not be able to eat and be in need of a feeding tube
We want her to live a long, happy and healthy life!
This is a lifelong fight. We have to face the reality, and supporters like you carry us, day by day.
We are hoping to raise $15,000 in just one week from April 25th until Liv's birthday on May 1st. Every dollar goes to the non-profit Cure Sanfilippo Foundation, to fund this critical research for a cure.
There is power in numbers. Will you help support & SHARE Liv’s campaign? The possibilities to share are ENDLESS. Please continue to help us write an alterante ending to our story, and so many other children with this cruel disease.
We thank you from the bottom of our hearts,
Sean, Becky, Wesley, and Liv
Please follow our story on Liv's facebook page at https://www.facebook.com/cureMPS
For more information on the Cure Sanfilippo Foundation, please visit: https://curesff.org/.