The story of Londyn
Londyn was born with what we know now is a rare, unknown genetic condition. After multiple genetic tests, it was determined Londyn has a change to her RAB5C gene. Doctors around the world including at her primary care Children’s hospital are working to learn more about this gene change and have recently found other patients with the same gene change. This could be the finding of a new Syndrome altogether.
Londyn did not hit typical milestones as a baby. She learned to walk independently at age 3. Londyn also has cognitive disabilities.
At age 5, she was diagnosed with Rhabdomyosarcoma, a rare sarcoma. She has been in remission since November 2021. While undergoing chemo treatments for cancer, Londyn came down with another rare disease – Guillain Barre Syndrome. It took away her ability to walk, hold her sippy cup, eat – and soon couldn’t breathe on her own. She spent 4 weeks on a ventilator. Eventually, she was on her way to recovery after an iviG treatment. She then spent 5 weeks in in-patient rehab – then finished her chemo and radiation treatments for cancer.
Today, we focus on Londyn regaining her mobility with multiple therapy sessions a week. She’s followed closely by her genetics team – and many other physicians at Riley Childrens Hospital in Indiana.
We hope one day to learn more about her rare RAB5C gene change to help us ensure she’s on the best pathway to success in her future.