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Willow Porter is a sweet girl that has brought so much joy to her family - Pete, Catherine, big sister Aria and little sister Maizie - as well as the extended family she has across the country. Willow was born with a rare genetic disorder called CDKL5 deficiency disorder, characterized by seizures that begin in infancy, followed by significant delays in many aspects of development. She is now 5 years old and continues growing everyday on her unique journey through life.
Every June, in honor of CDKL5 Awareness Day (June 17), we share Willow’s story through our campaign: Riding the Waves with Willow. This year marks our 4th annual event, and we’re setting out to raise $10,000 to support the essential therapies, equipment, and services that help Willow thrive.
In the past year:
- Willow experienced her longest seizure-free stretch ever—117 days—thanks to chiropractic care.
- Willow completed a transformative 3-week intensive therapy program at NAPA.
- We purchased our new family van, Biggie, that can safely fit her wheelchair, after a few improvements.
- We secured state funding for a wheelchair lift after months of advocacy.
- We’ve been supported by an incredible nurse, Kyrien, whose care has brought new peace and balance to our days.
Yet the reality of CDKL5 is that the needs never stop. We’re fundraising to help cover:
- Feeding therapy
- Hippotherapy
- Chiropractic Care
- Intensive Therapy with Movement Solutions
- Monthly Supplies, Supplements, and Adaptive Gear that is not covered by Insurance
- AAC device to help Willow communicate
- Speech Therapy
We know how hard things are for so many, and it means the world just to have you reading this. If you can donate, we are endlessly grateful. If you can share this with your network, that’s just as powerful.
Thank you for riding these waves with us—for the good days, the hard days, and every moment in between.
With love and gratitude,
Willow’s Family
How You Can Help
By contributing to Riding the Waves with Willow, big or small, you will be supporting her throughout her ever-changing journey. We know it's going to be a wild ride for the family. By contributing to this fund, you can help alleviate financial barriers so that the family can continue to focus on the best medical care for Willow, no matter the cost.
We really appreciate you being a part of Willow's life and will keep you posted with updates along the way. We are hoping to surround Willow and her family with the love and support they need to ride the wave of CDKL5!
Additional Ways to Help
Spread the word by sharing our fundraising link on social media: https://www.gofundme.com/manage/riding-the-waves-25
Learn more about CDKL5; check out the International Foundation for CDKL5 Research: https://www.cdkl5.com/about-cdkl5/
Organizer and beneficiary
Catherine Anselmo
Beneficiary