"Curing Angelman syndrome is not impossible, which means it's possible."
Thank you for opening your hearts to learn about and support the Angelman syndrome (AS) community.
We did not ask for this diagnosis, nor were we expecting it. We quickly learned we cannot control how life has turned out for our son, William, but we can control how we react. So we FIGHT. FIGHT for our son, our family, and the Angelman syndrome community. We are committed to providing him every opportunity to thrive in life. We will assume competence in him every day and let him tell us what he is or is not capable of. For the community, we are committed to doing our part to raise funds to support research for a cure, bring awareness to this disorder, and to foster hope and excitement around what can be for all of the individuals out there living with this this rare genetic disorder.
We cannot do it alone. It takes a village and we are grateful for any support you can offer.
Sincerely,
Jesse & Meghan
We did not ask for this diagnosis, nor were we expecting it. We quickly learned we cannot control how life has turned out for our son, William, but we can control how we react. So we FIGHT. FIGHT for our son, our family, and the Angelman syndrome community. We are committed to providing him every opportunity to thrive in life. We will assume competence in him every day and let him tell us what he is or is not capable of. For the community, we are committed to doing our part to raise funds to support research for a cure, bring awareness to this disorder, and to foster hope and excitement around what can be for all of the individuals out there living with this this rare genetic disorder.
We cannot do it alone. It takes a village and we are grateful for any support you can offer.
Sincerely,
Jesse & Meghan
Meet William James
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William was born in September 2017 and welcomed with love. He was and continues to be a happy, laid back child. Early on, he was not meeting developmental milestones, and doctors were struggling to identify the cause. In November 2019, we learned he was having atonic “drop” seizures which led to focused genetic testing for neurological disorders. On January 7, 2020, he was diagnosed with Angelman Syndrome. His disability does NOT mean inability. Since his diagnosis, he persists and surprises us daily with all that he is capable of. Things we never thought he would do he is doing. He is walking. He said, “I love you.” He is working on potty training. He even sleeps in a big boy bed! He is behind compared to his typical peers, and that does not stop him from living a full life. We live in the present, yet are hopeful for a cure so he can live a more independent life in the future. William is loved by his parents, Jesse and Meghan, younger brother Henry (who is typical), grandparents, and so many others. If you meet him, he will win your heart as well! |
Click the logo to see William on Instagram!
(You don't have to sign up or have the app to view his journey)
@will.i.can_with_angelman | #WilliCANxAS
The Angelman syndrome community is a front-runner for rare diseases because of the motivated families behind it. And because of that, better days are coming and we are dreaming BIG!
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