Her name means "Fair Warrior" and that she is. She is brave and she is a fighter.
Earlier this year after Finley's 2nd birthday, we received her diagnosis of Angelman Syndrome which means she's missing a piece of her 15th chromosome. Turns out that's a pretty important piece though!
Angelman Syndrome is a rare neurogenetic disorder that affects one in 15,000 people. Characteristics or symptoms of Angelman syndrome include developmental delay, lack of speech, seizures, and walking and balance disorders.
The diagnosis was a punch in the gut, but it gave us long sought out answers of her atypical development. And it gave us FAST and the amazing community that surrounds this organization.
Finley is an absolute ray of sunshine! She is incredibly determined, opinionated, funny and probably gives the best hugs of anyone on this planet. If you've met her and experienced them you know. We don't focus on how Angelman is defined on the internet, we focus on Finley and what she CAN do and her many accomplishments. And as a family, we are committed to living our best life despite these challenges.
We love Finley exactly as she is but IF there is ANY chance out there of making her life easier, of allowing her to communicate basic needs through speech, walk, dress herself and live without the fear of seizures then we will fight. We will fight like Finley does everyday. She inspires us.
We are fundraising for FAST because their sole mission is to cure Angelman Syndrome and they have brought together a multidisciplinary team of more than two-dozen scientists from top research universities and pharmaceutical companies!! Pretty exciting right? FAST researchers know exactly what causes AS and have already cured it in the laboratory and there are five therapy strategies in development to treat Angelman syndrome!!
Since AS is not as high-profile as many other disorders, scientific research depends on parents raising support from friends and friends-of-friends. Every single dollar counts and makes a difference.
Thank you for reading our story and supporting us!