
Supporting Adley through her Rett journey
Donation protected
Hi,
My name is Laura Whalen I'm the mother to our little warrior Adley...
Our family never asks for help, but from the bottom of my heart, this is me being as vulnerable as I ever have been for our little girl.
As many of you know Adley has had developmental delays since she was 15 months old... Thus began a cascade of doctor’s appointments, therapy evaluations, and tests to figure out the cause of the delays. It's been nothing but heartache after heartache for our family.
On Wednesday, March 15th, 2023 we received crushing news that no parents want to hear. The results of Adley's genetic test showed that she was positive for MECP2-related Rett spectrum disorder aka Rett Syndrome.
Rett Syndrome is a rare genetic neurological disorder that leads to severe impairments, affecting nearly every aspect of life. Rett particularly affects speech, purposeful hand use, and coordination, leaving individuals understanding more than they can communicate. Caused by a gene mutation, Rett is first recognized in infancy and occurs primarily in girls and rarely in boys. Neither myself nor Joshua are carriers of Rett Syndrome. This occurred sporadically when Adley was conceived.
You can read more about RS here: https://www.rettsyndrome.org/
Needless to say, this is going to be a lifetime journey for our family. With that said, I wanted to start a fundraiser to help with Adleys anticipated medical expenses. Adley will need 24/7 care and medical attention for the rest of her life and no one is ever prepared for something of this nature.
These are some costs that our family anticipates:
1. AAC Device - $1,000
2. Hippotherapy - $2,000.00
3. Therapy Equipment for PT, OT, & SLP - $10,000
4. Travel Expenses - $10,000
5. Mental Health Services for Family - $20,000
6. Adaptive Home Medical Equipment - $50,000
7. Specialized caregiving - $100,000
Even the littlest will help our family...
Organizer
Laura Whalen
Organizer
Etna, ME