According to Lily’s mom, Malin Delling:
Lily’s 8th birthday is just coming up and in some ways she is the most typical 8-year old girl you will meet. She loves school and her teacher, and reads and does math at her grade level. Her favorite things to do are surfing, swimming, horseback riding, dancing and listening to music; more than anything, she loves hanging out with her friends. But unlike your average 8-year old, Lily can’t do any of those things without full support. Rett Syndrome has taken away her speech and her hand use, and she can only walk with assistance. Sometimes she gets frozen, unable to breathe, and she has days when dystonia causes her body to shake uncontrollably or get stuck in involuntary movement. Lily basically spends every minute of every day fighting a body that doesn’t cooperate anymore.
We take her to numerous therapies every week, just to keep the status quo. But Rett Syndrome is a progressive disorder, so until there is a cure, nothing is ever going to get easier for Lily. It’s just going to get increasingly harder and her body will get more and more affected by constant neurological battles. Imagine, when you look at your kids or grandkids, and think how bittersweet it is that they will not be this small and cute forever, that, as Rett parents, we look at our kids and know that, barring a cure, this is the most functional they will ever be.
But thanks to all of you that support RSRT, there is now actual hope for a cure! The first gene therapy trial is currently recruiting and the research that got us to this point was heavily funded by RSRT. We are so thankful for your support and hopefully we’ll be able to share even better news by Lily’s next birthday.
Deepest thanks from Ann Fromm, my dedicated husband Bill Payne, and Lily’s super-wonderful parents, my son, Devin Fromm and his wife, Malin Delling.
Make a Donation
|Marie Hinchlidfe||$100.00||November 29, 2022|
|Lynn Detrick||$100.00||November 29, 2022|
|DONNA ROSENWASSER||$100.00||November 29, 2022|
|Barbara Maher||$250.00||November 29, 2022|
|Kathleen Laboon||$50.00||November 28, 2022|
|Louis Certo||$50.00||November 28, 2022|
|Malin & Devin Delling Fromm||$100.00||November 26, 2022|
|Ann Fromm & Bill Payne||$20,000.00||November 24, 2022|
|Anonymous||$10.00||November 23, 2022|