To know Charlie is to know pure love and joy! Her eyes light up the room and it’s impossible not to fall in love with her. Her fun personality and sociability just draws you in! She is our heart and hero and we are her voice.
Charlie has had so many wonderful supporters since her diagnosis to help cheer her on and to help her meet her needs. xoxo Charlie’s Angels. Charlie fights every day against Rett syndrome and we need to fight hard to get our girl a cure to give her the best quality of life.
Currently there are several paths for a cure and trials going on to reduce symptoms and or reverse Rett syndrome. Scientist have been able to reverse the Mecp2 gene causing Rett syndrome in lab mice. We are so full of hope!
Charlie needs a cure as Rett syndrome continues to progress. Charlie is brilliant but is captive in the body that fails her. Rett syndrome has taken her ability to speak, use of her hands or to walk. Despite this she persists with a smile, grace and unthinkable strength.
Charlie update- like most of us the last few years have been difficult and extra hard on Charlie, due to having such fragile health, Covid had kept us isolated much of the year. We did however get to really enjoy the summer! We were able to attend a family summer camp at Victory Junction where she got to fly in a hot air balloon and participate in adapted sports and get a typical camp experience. Charlie also attended several speech camps where she worked with her Tobii Eye Gaze to help improve upon her communication. She also loved horse therapy, surfing and swimming this year!
We are still working to get Charlie’s tonic seizures under control but she went from an average of 22 a day to 2 a day. She had a difficult year with breath holding issues and GI issues but we are working with her specialists to get these under control so she can enjoy life to the fullest. Charlie will have a few procedures this fall as well. This year Charlie has made gains with practice to stand with assistance and work on steps, she has learned how to use a straw and is able to hold a fork some and help with feeding! She received a new Tobii eye gaze device which has been amazing as she is able to share more about her thoughts, feelings and show off her great sense of humor and wit!
Despite her challenges she is working really hard and hasn’t lost any skills which is remarkable! Most of her days are spent working on her PT, OT, and speech skills.
Charlie just returned from New York City where she saw all her specialists at the Rett Clinic, Montefiore Children’s Hospital. Overall Charlie is doing well. We received hopeful information about Gene Therapy trials starting in January. We are hopeful that in a few years we will be able to see some promising treatments and a cure to help Charlie walk, talk and use her hands and enjoy an even better quality of life.
Rett syndrome has been cured in mice in recent lab studies and the advances for different medications and roads for a cure are moving full steam ahead. Please consider supporting Charlie and Rett Syndrome!
Charlie's Superhero
1 Donor
Charlie's Hero
1 Donor
Charlie's Star
9 Donors
Charlie's Warrior
12 Donors
Charlie's Angel (ticket price)
28 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Suzanne Lundin | $200 | December 09, 2022 |
| daniele clark | $25 | October 28, 2022 |
| Joseph Trippodo | $5,331 | October 28, 2022 |
| Clara Kelly | $100 | October 19, 2022 |
| John Duberstein | $50 | October 10, 2022 |
| Anna Pulliam | $100 | October 09, 2022 |
| Terrence Wessling | $20 | October 09, 2022 |
| Lara Ring | $50 | October 09, 2022 |
| Kristine Barnette | $40 | October 09, 2022 |
| caitlin shanahan | $20 | October 09, 2022 |
| Claudia Matthews | $50 | October 09, 2022 |
| Jamal Sharpe | $40 | October 09, 2022 |
| Kate Sprinkle | $200 | October 09, 2022 |
| Brian Trippodo | $20 | October 09, 2022 |
| Patrick Forbis | $50 | October 09, 2022 |
| Julian Johnson | $20 | October 09, 2022 |
| Aaron Langhorne | $20 | October 09, 2022 |
| Antoni Ronquillo | $20 | October 09, 2022 |
| Juan Monjaras | $20 | October 09, 2022 |
| John Stevens | $20 | October 09, 2022 |
| Luanne Mossa | $60 | October 09, 2022 |
| Mikayla Smith | $20 | October 09, 2022 |
| Mikayla Smith | $20 | October 09, 2022 |
| Lissa Pope | $20 | October 09, 2022 |
| Summer Smith | $20 | October 09, 2022 |
| Madeline Shelor | $20 | October 09, 2022 |
| Marie Wiederhoeft | $20 | October 09, 2022 |
| Adam Baynard | $20 | October 09, 2022 |
| Kathleen Trippdo | $50 | October 09, 2022 |
| Christine McPEAK | $100 | October 09, 2022 |
| Ann Hadden Good | $20 | October 09, 2022 |
| Randy Hadden Good | $20 | October 09, 2022 |
| Katherine Gerondelis | $15 | October 08, 2022 |
| Scott Romine | $20 | October 08, 2022 |
| Karen Weyler | $20 | October 08, 2022 |
| Danielle Crosby | $20 | October 07, 2022 |
| Danielle Crosby | $20 | October 07, 2022 |
| Danielle Crosby | $20 | October 07, 2022 |
| Laurie Laurie | $20 | October 07, 2022 |
| Benjamin Varnedoe | $75 | October 07, 2022 |
| Barri Maxwell | $50 | October 06, 2022 |
| Robin Mcpherson | $75 | October 05, 2022 |
| Della Good | $50 | October 05, 2022 |
| Anonymous | $50 | October 05, 2022 |
| Ron Sudell | $200 | October 04, 2022 |
| Natalie Swaim | $20 | October 03, 2022 |
| Victor Cruz | $50 | October 01, 2022 |
| Anonymous | $500 | September 26, 2022 |
| Colleen Callahan | $50 | September 25, 2022 |
| Terry Kennedy | $40 | September 20, 2022 |
| Sarah Warner | $50 | September 11, 2022 |
| Bryna Fitzpatrick | $100 | September 01, 2022 |