Identical twins Claire and Lura were born in January 2024. They were a little early and a little small but otherwise healthy and very happy. Around 6 months old, we began to notice that they were not rolling or sitting up as expected so we embarked on a months long journey of therapies, doctor appointments, and genetic testing culminating with a diagnosis we never saw coming – “Your children have Rett Syndrome.”
The Twinsleys, as the pair is affectionately known, are the biggest joy in their parents’ lives. They love silly sounds, going on walks, and spending time with all of their family and friends. They especially enjoy trying (aka licking) as many new foods as possible. Their loving spirit is felt by everyone they meet.
We can only dream of the amazing future these two will have, but because Rett Syndrome has robbed them of their mobility, speech, and independence, it remains just that – a dream. Fortunately, this dream is being worked on by a research trust founded by a Rett mom. This amazing team is on a mission to use science to develop a cure. Very promising gene therapies are on the horizon but require regular funding. Most, if not all, funding used for these studies is from private sources.
So, in honor of Claire and Lura and the future we dream they can have, we ask you to help us make our dream a reality by donating to the RSRT today.
Learn more:
About Rett Syndrome: https://reverserett.org/about-rett-syndrome/
Roadmap to Cures: https://reverserett.org/cures/
Follow Our Journey: https://facebook.com/people/Team-Twinsley-Our-Rett-Syndrome-Journey/61574126129016/
Team Twinsley Super Star
3 Donors
Team Twinsley Hero
3 Donors
Team Twinsley Champion
3 Donors
Team Twinsley Advocate
16 Donors
Team Twinsley Friend
8 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Anonymous | $100 | April 01, 2025 |
| Debra Hensley | $250 | April 01, 2025 |
| Sarah Conner | $100 | April 01, 2025 |
| Anonymous | $50 | April 01, 2025 |
| Gina Hines | $50 | April 01, 2025 |
| Tracy Satcho | $50 | April 01, 2025 |
| Suanne Robert Chastain | $100 | April 01, 2025 |
| Anonymous | $150 | April 01, 2025 |
| Susan Forsgard | $100 | April 01, 2025 |
| Helen Owens | $50 | April 01, 2025 |
| Anonymous | $100 | April 01, 2025 |
| Jerry Hensley | $1,000 | April 01, 2025 |
| Kay & Glenn Mead | $100 | April 01, 2025 |
| Janet Lee | $250 | April 01, 2025 |
| Heather Little | $20 | April 01, 2025 |
| Janet Bullinger | $100 | April 01, 2025 |
| Michelle Hensley | $2,500 | April 01, 2025 |
| Margaret OBanion | $100 | April 01, 2025 |
| John Pielemeier | $100 | April 01, 2025 |
| Brent Edwards | $100 | April 01, 2025 |
| Andrew Bailey | $50 | April 01, 2025 |
| Richard Price | $500 | April 01, 2025 |
| Nedra Hurley | $100 | April 01, 2025 |
| Lisa McDonald | $100 | April 01, 2025 |
| Nikki Gainey | $100 | April 01, 2025 |
| Morgan Lovay | $150 | April 01, 2025 |
| Anonymous | $25 | April 01, 2025 |
| Jasmine Chatten | $50 | April 01, 2025 |
| Stephanie Price | $500 | April 01, 2025 |
| Sue Cox | $250 | April 01, 2025 |
| Susan Price | $500 | April 01, 2025 |
| Anonymous | $100 | April 01, 2025 |
| Pat Hensley | $50 | April 01, 2025 |
| Aimee Sherrill | $50 | April 01, 2025 |
| Uncle Tom and Aunt lindi Lovay | $1,000 | April 01, 2025 |