Believe in Blaire!
Blaire, born in November 2022, initially developed like any other infant, hitting most milestones and bringing immense joy to our lives. However, around 9 months old, we noticed changes in her gross motor skills. This led to a whirlwind of weekly physical therapy sessions, neurologist visits, a brain MRI, and genetic testing. Just after Blaire’s first birthday in November 2023, we received the devastating diagnosis: Rett syndrome. This news shook our world in ways we can’t even describe, the past year has been a rollercoaster of emotions as we grapple with the implications for Blaire and our family.
Despite these challenges, Blaire’s spirit shines brightly! Her resilience and infectious happiness continue to touch everyone she meets. As her parents, we’re dedicated to finding a cure for Rett syndrome, hoping to pave the way for Blaire and other children like her to lead full and more independent lives.
Through it all, Blaire remains our greatest source of strength and inspiration. Her journey has only just begun, and we’re committed to supporting her every step of the way.
The Rett Syndrome Research Trust (RSRT) was founded with the singular goal of finding cures for Rett syndrome. Founded and operated by parents affected by their loved one’s Rett syndrome diagnosis, RSRT has made incredible progress in advancing groundbreaking research. Their initiatives have directly influenced two gene therapy clinical trials now underway: Neurogene and Taysha. This research is driving scientific advancements that will have benefits beyond Rett syndrome. RSRT has an ambitious roadmap with a fundraising goal of $40 million in 4 years to advance these promising approaches.
Learn more about the cause here:
Blaire's Hero
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Blaire's Star
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Blaire's Champion
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Blaire's Supporter
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Blaire's Advocate
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