Meet the Twinsleys

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.

Reasons for Optimism

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 RSRT through this page today!

Learn more:

About Rett Syndrome

Roadmap to Cures

Follow Our Journey on Facebook

A Cure for Claire & Lura

By Rett Syndrome Research Trust

A Cure for Claire & Lura

For Claire and Lura, and the future we dream they can have, we ask you to help us make our dream a reality.