This year marks 7 years since Lily’s diagnosis of Rett syndrome in 2017. This chapter in our journey has been the ultimate test of resiliency and navigating the healthcare system for rare disorders. Seizure management, accelerated onset of scoliosis and the knock-on effects of years in a wheelchair are compounded by an increase in height and weight. Needless to say, Andrew and I are doubling down our focus on mental and physical health to ensure we are giving her a high quality of life.
We know that Rett syndrome steals the voices of our loved ones, trapping vibrant minds in silent bodies. We remind you, our trusted network (family, friends and colleagues), that your donation brings us one step closer to groundbreaking research that could unlock their potential and restore their independence. We are on the precipice of a cure. What was once a dream, of a world where every child affected can express their thoughts, is within our reach. Rett Syndrome Research Trust, our trusted partner, is advancing various pathways to feed the cure pipeline, leading to clinical trials and eventual eradication of Rett.
Silent angels like Lily and their families dream of laughter, mobility and ease of breath and this can be achieved with you leaning in with us. Your support can turn hope into reality for families fighting this devastating condition. Together, let’s ignite a future filled with possibility and joy for those who need it most.
| Name | Donation Amount | Date |
|---|---|---|
| Juliann & Andrew Edwards | $10,000 | October 16, 2024 |