Dear Friends & Family,
Reese is my GREAT NIECE or GRAND NIECE, whichever you prefer. Both words describe her perfectly. She is a beautiful 3 year old. She is sweet, observant and happy. She is a precious daughter, grand daughter, niece, cousin and of course an older sister to her 2 year old brother Coby. Reese is not a typical 3 year old. Reese was born with a RARE genetic disorder. It did not come to light until Reese was 3 months old. Something no one would be prepared for. Marisa & Michael, her parents, are doing a remarkable job getting her the tools she needs to thrive BUT as I mentioned this is a Rare Disorder and funds are desperately needed to bring awareness. I cannot do justice to Reese's story. I urge you to read her team page Reese's Roadies. Marisa, and Michael have explained their journey thus far. They all work incredibly hard to give Reese the quality of life she deserves.
Reese cannot talk or walk BUT she speaks to you with her soulful eyes. She has made remarkable strides with intense physical therapy.
As a family member you often feel helpless. Raising funds is something that I can do and with your help we can make a difference.
The STXBP1 Foundation, a 501(c)3 dedicated to raising awareness and finding a cure for STXBP1-Related Disorder. We work with families, physicians, scientists, and pharmaceutical innovators. The STXBP1 Foundation was created by a group of dedicated parents. Our nonprofit is focused on advocacy, driving research, and providing our families and their physicians with information and resources.
Look at this child's photo! She looks in your eyes and all you want to do is give her everything she needs. She has already given everyone around her pure joy and love.
Thank you for supporting the STXBP1 Foundation and helping to fund research and to hopefully one day cure STXBP1.
Thank you for your time and support,
Lori
