By: Nicole, Parent of Taylor, an 18 year old with a MED13L genetic change
“Don’t quit excepting great things from you’re child. Keep pushing!”
What is your child’s relationship like with his/her siblings?
She gets along well with all her siblings.
What does your family do for fun?
We attend her schools sporting events. She loves to cheer on the Raceland Rams!
Tell us about the biggest hardship your family faces.
That Taylor will never be able to live on her own.
What about your child puts a smile on your face?
Everything! She’s very sweet and tries a 100% on everything she does.
What motivates you to participate in research?
To find our more about what the future holds for my daughter.
What have you learned about your child’s condition from other families?
There’s several similarities. Such as, club feet, learning disabilities, needs glasses, low muscle tone, speech, meeting milestones late, etc
If you could give one piece of advice to someone recently diagnosed with the genetic change in your family, what would it be?
Don’t quit excepting great things from you’re child. Keep pushing!
What is one question you wish researchers could answer about your child’s genetic change?
What will her prognosis be?
Is there anything else you would like to share with other families?
When Taylor was 7 months old the doctor told me she would never sit up, walk or talk and that I needed to prepare for that. However, my family and I decided that was not ok. We gave her ever resource we could find. We all work hard at doing what we needed to do to ensure her success. Now she can talk well, walk, read, write etc. She a strong kid and has a wonderful support system and she beat the odds. So don’t ever give up.