We need your help to save our little 3-year-old daughter Willow, who is suffering from a rare and fatal genetic condition called Multiple Sulfatase Deficiency, for which there is currently no known cure. Your donation of $5 or more and share on Facebook will help create the first-ever treatment for MSD and save the lives of children, including Willow, who will otherwise die a very painful death from this degenerative disease.WHERE THE MONEY IS GOING
All donations are to fund research for a treatment for children with MSD. Donations are tax deductible and go to the non-profit formed by Amber Olsen (Willow's Mom) the United MSD Foundation
, a non-profit 501c3 (Tax ID:81-3669443) that has been working with the Dr. Steven Gray at the Gene Therapy Center at the University of North Carolina. 100% of the funds will go to the research and creating the clinical trial to get this treatment to help not only Willow but other children with MSD.OUR STORY
On May 9, 2016 our beautiful, 3-year-old baby girl, Willow Cannan was diagnosed with MSD. The doctors told us to go home and spend time with our daughter, that there was nothing we could do besides be with her and make her comfortable. We found out through our research that treatment was close but lacked funding. We realized we had to develop a plan and put it in action, so we created the United MSD Foundation to raise money for a cure. We have been working with a team of experts and doctors from all over the world to get research started so that a cure can be identified. We live in Ocean Springs, Mississippi.
Gene therapy treatment, which has shown to be very promising for conditions like MSD, is within our reach, but it just requires funding. Timing is critical, as the condition progresses quickly. Willow now walks with a walker, has trouble sitting or eating on her own, and has never spoken. We urgently need your help raising funds by October 1, 2017 so that we can enter the next phase of research to develop a cure. This is Willow’s best chance for survival. Without treatment, she and other children with this condition will likely die a very painful death before they reach 10 years of age.
WHAT IS MSD
Multiple Sulfatase Deficiency (MSD), a rare type of lysosomal storage disorder. Children with this condition are born with a mutation of the SUMF1 gene, which means that their bodies do not create sulfatase enzymes. This prevents their bodies from breaking down and recycling natural cellular waste. It is a fatal condition that affects the entire body. Their bodies slowly stop functioning, they go blind, and their brain eventually shuts down (like a fast-moving Alzheimer's). Most children with MSD die before their tenth birthday.
CLEAR TRACK TO TREATMENT
1. Safety Studies
2. Manufacture clinical grade vector
3. Obtain FDA approval
4. Children are treated in clinical trial
Our family, including Willow's sisters (age 14 and 10) are so scared of the life that Willow won't have a chance to live, but with your help, we can save her and cure this terrible condition for all children with MSD.
Thank you for the support.
Tom, Amber, Kylee, Jenna and Willow (Willow's Mom, Dad, and Sisters)**No donation is too small, with so many helping, we can reach our goal quickly.
**Share, Share, Share our story #warriorsforwillow
We hope you will continue to follow our story. We will be posting updates regularly and the GoFundMe page will remain active.
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