I can still hear Baylee’s tiny voice yelling “Momma, Dadda!” Sadly I haven’t heard that sweet little voice in almost three years and I’m probably never going to hear it ever again. Baylee started out life developing like your typical, everyday child up until she was about 18 months old, but then some things started to slip away from her….. She stopped saying her words, using utensils, she started to flap and wring her hands and worse, she started to hurt herself. Her pediatrician and a slew of medical professionals diagnosed our sweet girl as Autistic and we dove head first into research. While we learned all we could about everything Autism, Baylee just kept being her happy self.
But she kept going backwards in her development, mentally and physically. One day her ABA therapist suggested we talk to a neurologist about possible Rett Syndrome. After several doctors and tests, Baylee was diagnosed in July 2022 with Rett Syndrome, a very rare condition. It felt like our happy world was crashing down around us. We heard about possible future symptoms like seizures, scoliosis, losing the ability to walk and never talking again. Unfortunately, no one can tell us when those things will start happening or even how to expect them to start. Will she find it difficult to walk a little more each day or will she wake up one Tuesday and have completely lost the ability to walk? We won’t know until it happens I guess. There is one thing we do know though. Without research, we’ll never find the cure. That’s where you come in. Without fundraising, our sweet Baylee will only continue to get worse. We’re grateful for the continuing devotion by the Rett Syndrome Research Trust and so many others to find the cure for Rett Syndrome, for our Baylee and all the children suffering from this like she is. Baylee’s unconditional love and overall zest for life keeps our family strong as we embrace each new day together.
Baylee's Superhero
4 Donors
Baylee's Hero
0 Donors
Baylee's Star
3 Donors
Baylee's Champion
1 Donor
Baylee's Fan
0 Donors
| Name | Donation Amount | Date |
|---|---|---|
| Evan Shieh | $100 | October 20, 2023 |
| Anonymous | $20 | October 20, 2023 |
| C J and Jane Shieh | $1,000 | October 17, 2023 |
| The Miles Family | $100 | April 11, 2023 |
| Angie Vasquez | $75 | February 14, 2023 |
| $500 | November 21, 2022 | |
| Jessie Goss | $20 | October 08, 2022 |
| Mariana Lightfoot | $250 | October 07, 2022 |
| Alana McQuarry | $250 | October 07, 2022 |
| Kaitlyn Terry | $100 | October 03, 2022 |