- Williams Syndrome
- Interviews
Thomas's interview
How did all start?
My son was born july 2015 at 37 weeks. He was diagnosed with WS at 3 months by our cardiologist after investigating his heart defects.
Do you already have a diagnosis? How long did it take you to get it?
It took several weeks for results to come in from genetics. My son was 3 months old when we got his diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
He is seeing Cardiology, Urology, ENT, a geneticist, speech, occupational therapy and physical therapy. All have been helpful.
What has been the most useful thing for you so far?
Our cardiologist; most critical think to monitor. All therapies are helpful to maintain forward progress.
What have been your biggest difficulties?
Managing appointments becomes overwhelming at times.
How has your social and family environment reacted? Have your social or family relationships changed?
They have all been very supportive and accepting of my son. Some relationships have changed but mainly because having a child with special needs is time consuming and stressful.
What things have you stopped doing?
Traveling. In our case it is difficult to visit family. My son have sensory issues and sleeping anywhere bit in his home is stressful and usually results in meltdowns all night.
What do you think about the future?
I try to take things one day at a time. I don't know what the future is for him so why spend too much time worried about it instead of enjoying the moment in front of me.
So far, which years have been the best years in your life? What have you done during them?
As a parent of a child with WS that's only 2 years old; the first year was extremely hard but we are definitely enjoying this second one with much less stress.
What would you like to do if you didn’t have your condition?
N/A
If you had to describe your life in a sentence, what would it be?
A beautiful journey down a path unknown.
Finally, what advice would you give to a person in a similar situation?
Seeks support groups
