Welcome to Willows Warriors Fundraising Page!
Willow was born with a genetic disorder Stxbp1 which is a gene that affects brain development and neurotransmitter signaling. This can result in epilepsy, intellectual disability, developmental delays, movement disorders and other difficulties.
She was diagnosed when she was 3 months. She had seizures as an infant and was on strong medication that helped,Mom and dad had to give her shots daily. It was hard to see her go through that. I know as young parents you dream of the things your child will accomplish but for Willow those accomplishments will be different. We are glad we are past those days and seizures have stopped at least we think ,we're always recording questionable things she does. We often wonder what will the future hold? The challenges will still continue and we won't stop trying . With the research being done we are hopeful. We have so many unknowns since this disorder seems to affect each person differently.
Do we hope one day we will hear her say some words in her sweet voice ,yes we do.
Do we hope she may be mobile even with some assistance, yes we do.
She has such a joyful spirit no matter what is going on, she's curious and loves being outdoors , loves the water and music.
She is a blessing and has changed our lives, we are Seeing things differently and we are all learning together.
Thank you in advance for your generous donation to the STXBP1 Foundation, we are thrilled to have you join Willows Warriors. Your donation and participation means the world to us and the entire STXBP1 community! Donations directly fund critical research for treatments, therapies, and a cure for STXBP1 disorders.
Buy custom team shirts here: https://www.bonfire.com/willows-warriors-move-to-cure-stxbp1/?utm_source=copy_link&utm_medium=campaign_page&utm_campaign=willows-warriors-move-to-cure-stxbp1&utm_content=default
Toddler shirts use this link : https://www.bonfire.com/willows-warriors-move-to-cure-stxbp1-1/
