My beautiful granddaughter, Lily, 10, has Rett Syndrome, a devastating rare disease caused by a mutated gene. Since the age of two, she’s been unable to walk, talk or feed herself. Yet with the help of a special computer, she tested into fifth grade. Her devoted dog is named “Kaya.”
Besides everyday tasks, and too many hospital visits, Devin and Malin frequently take Lily skiing, surfing, horseback riding, swimming, and to a special camp, all facilitated by extraordinary volunteers and staff. Lily loves these outings. We do too, so palpable is her joy.
Will Lily ever be able to ski on her own? Read a book? Surf?
I’d be happy if she could feed herself a bite of cereal someday.
Or turn the pages of a book.
We know that someday, there will be a cure. Other single-gene diseases have been cured. May the bounty of the earth, and the best minds in our country, yield a Rett Syndrome cure, soon.
The Rett Syndrome Research Trust is a 501(c)(3) charity single-mindedly dedicated to finding a cure for Lily and the 350,000 other girls and women suffering from the disease. Since 2008, the Trust has given more than $85 million to physicians and scientists seeking a Rett cure. 94% of every dollar you donate supports the goal of finding a cure for Rett. That’s an excellent record.
With special thanks to my family:
William Payne; Malin Delling, Devin Fromm & Lily Fromm; Allison Fromm; Calvin Laboon; Jay & Colleen McKenna; Ed & Patsy McKenna; Marian McKenna
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| Name | Donation Amount | Date |
|---|---|---|
| Ann Fromm & Bill Payne | $5,000 | October 29, 2025 |
| Ericka & Jordan Strassburger | $500 | October 28, 2025 |