- Weaver Syndrome
- Interviews
Tineke's interview
How did all start?
From the day my daughter was born, her father and I had a feeling that she wasn't completely healthy. She was very large and as the years gone by she had some overgrowth.
Do you already have a diagnosis? How long did it take you to get it?
We got the diagnosis on the 30th of November 2020. It has been a journey of 8 years, from her birth till the final diagnosis. It couldn't have been sooner I guess, because the divergence she has on the SUZ12-gen wasn't discovered and labeled as Weaver-syndrome till 2017.
For what medical specialties have you been treated? What has been the most useful specialty for your?
None. Well she gets some speech therapy and sensorimotor therapy, but that's more to help her with her basic needs.
What have been your biggest difficulties?
The unknown things about Weaver-syndrome. We don't know what the future holds. And there is nobody who can say if we treat her the right way.
How has your social and family environment reacted? Have your social or family relationships changed?
We got more understanding from the family and social environment.
What things have you stopped doing?
We stopped pushing her to act 'normal', to stop acting like a 'baby'. And so she is much more relaxed, because the expectations are not so high anymore.
