Let’s make 8 great! Charlie is turning 8 years old this August and she is asking everyone to donate $8 towards Rett Syndrome Research. She has said on her Tobii (eye gaze communication device), “HELP, I’M READY; FIND CURE”. We are hopeful that this will be our year.
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. There are 2 companies presently conducting gene therapy trials that we hope will eventually show promise in reducing symptoms and/or reversing Rett syndrome. Scientists have been able to reverse Rett syndrome in lab mice and human trials are happening this year! We are so full of hope that these trials will produce positive results with treatment hopefully right around the corner!
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- Charlie has been able to experience a lot this past year. On her eye gaze device she keeps saying ” I want to GO”. And we have! We were lucky enough to be able to take Charlie’s Make-A-Wish trip to Disney this year. Our whole family had a blast. She went from sun up to sun down and even went swimming with dolphins! Charlie has spent her summer in different camps (including eye gaze camp and horse camp) making new friends with her sister Lucy and raising awareness for Rett Syndrome. She has also spent some time at the beach where she loves to relax, sit in the sand, watch the ocean and of course try some adapted surfing.
Charlie works to sharpen her skills everyday! She has shown steady progress with physical therapy including balance and endurance, small gains in hand use and great progress with Tobii where she is talking up a storm!
She is still struggling with seizures and GI issues, bone density and scoliosis, worsened breathing issues and several hospitalizations.
Despite her challenges she is working really hard and hasn’t lost any skills which is remarkable! Through all of her hardships Charlie always has the best attitude and is very engaging and extremely social. Charlie has developed an incredible and unbreakable bond with her sister, Lucy. She is a happy little girl who brings happiness to everyone she meets; especially her family. Most of her days are spent working on her PT, OT, and speech skills.
Please consider supporting Charlie and Rett Syndrome! And wishing this girl a great year 8!
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30 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Anonymous | $300 | March 06, 2024 |
| Ian Wall | $80 | January 27, 2024 |
| Black Magnolia Southern Patisserie | $150 | November 20, 2023 |
| Christopher Funchess | $80 | November 01, 2023 |
| Ian Wall | $38 | October 31, 2023 |
| Logan Forbis | $8 | October 25, 2023 |
| Anonymous | $8 | October 19, 2023 |
| Mackenzie Bademian | $8 | October 14, 2023 |
| Anonymous | $600 | October 07, 2023 |
| Anonymous | $353 | October 07, 2023 |
| Sandra Lee | $25 | September 25, 2023 |
| Sarah Bianco | $25 | September 21, 2023 |
| Anonymous | $120 | September 15, 2023 |
| Anonymous | $25 | September 15, 2023 |
| Anonymous | $25 | September 15, 2023 |
| Jay Edgarton | $50 | September 15, 2023 |
| Ralph Walker | $100 | September 08, 2023 |
| Jennie Duberstein | $80 | September 07, 2023 |
| Shawn Delgado | $50 | September 07, 2023 |
| Lauren Atkinson | $100 | September 06, 2023 |
| Kelsey Hiscock | $8 | September 06, 2023 |
| Benjamin Burnside | $80 | September 04, 2023 |
| Anna Pulliam | $100 | August 30, 2023 |
| Yum Yum | $100 | August 29, 2023 |
| Terry Kennedy | $50 | August 17, 2023 |
| Florence Hiscock | $8 | August 15, 2023 |
| Kathie Barker | $50 | August 15, 2023 |
| Brian Stevenson | $8 | August 13, 2023 |
| Anonymous | $8 | August 10, 2023 |
| Anne Gruemmer | $8 | August 10, 2023 |
| Mariann & Art de Iturrondo James | $88 | August 05, 2023 |
| McKay Armstrong | $8 | August 05, 2023 |
| Juliann Bademian | $16 | August 05, 2023 |
| Juliann Bademian | $0 | August 05, 2023 |
| Laurie Shoaf | $50 | August 05, 2023 |
| Kristen Morgillo | $20 | August 04, 2023 |
| Colleen Callahan | $40 | August 04, 2023 |
| Emily Benton | $8 | August 04, 2023 |
| Rachel Harmon | $8 | August 04, 2023 |
| Michael Gaspeny | $24 | August 04, 2023 |
| Joseph M Trippodo | $80 | August 04, 2023 |
| Robert Whetatone | $24 | August 04, 2023 |
| Megan Stevens | $65 | August 03, 2023 |
| William de Iturrondo | $50 | August 03, 2023 |
| Patrick Kelly | $8 | August 03, 2023 |
| Ashley Honeycutt | $80 | August 03, 2023 |
| Meredith Ross | $32 | August 03, 2023 |