About Carly

A Child with Many Special Needs

My daughter Carly was born Bi-Lateral Cleft Lip and Palate, She has also had two brain surgeries to remove tumors. In addition to that, she has seizures. April of 2014, on top of everything else, she has been diagnosed with Autism. Carly is Non- Verbal! She has hypotonia! Beginnings of scoliosis. 

At the age of 3 years and 10 months, Carly started walking- not a few steps, but her first time walking she took off and walked for 3 minutes before falling down. 

Then shortly after she started walking, she started feeding herself with a spoon. At 9 years old she still has a hard time scouping due to fine motor issues. She cannot use a fork. 


Carly wants to speak words! But the words don't come out. She can sing 3-4 note sections. She wants to run, but her legs don't connect with the ground. She wants to play, but children turn away. Her brain is malfunctioning in many ways. Carly has DDX3X Genetic Mutation. This is a newly discovered and the test to get the diagnosis is extremely expensive. Since they reduced the price, more diagnosis have come to light with the expectation that hundreds of thousands of children with similar comorbid conditions have this mutation. 




A Positive Solution

Research! Carly's Cause is getting behind the research in two ways:

1. A fund that will go to Sherr Lab at UCSF, who has a mouse model ready to test new drug therapies that change the function of the protein within the cell and can increase brain function. 

2. A fund that will help parents who do not have the money for the co-pay for testing to get it done. Our strength is going to be in numbers. 

We appreciate your support!

 

 

Carly Clapping to a Song

Carly's first time walking