- Dandy-Walker Syndrome
- Interviews
Kamori's interview
How did all start?
Like any other pregnant lady. Swollen feet and body. Gained 25kg. Snacking all the times. During 5-6 months USG doctor said the baby got a larger head than the standard baby. but never crossed my mind i will have to deal with this problem with my baby.
Do you already have a diagnosis? How long did it take you to get it?
I found out about my baby having a dandy walker syndrome at 7months pregnancy. Doctor found water inside her head from 4D usg.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Long term therapy is the most important things to do. Never give up.
What have been your biggest difficulties?
Leaning off feeding tube/NGT. So hard to break the pattern if your kid using feeding tube since she was born. But.... My girl is 5.5yo now. Still need her feeding tube. But start eating orally as her daily routine starting this month. Couldn't ask for more. For me this is the moment i've been waiting for. Hopefully this end of the year we can put away the feeding tube.
How has your social and family environment reacted? Have your social or family relationships changed?
Everything has changed. Family and friends are very supportive.
Its like finding a new social circle, but this one fill with doctors, therapists, special needs parents and with amazing stories everyday.
What things have you stopped doing?
Going out with friends. Working my crafts. Stay up late. Doing make ups and stuff.
What do you think about the future?
Very hopefull :) i hope my girl can catch up her milestones someday. Better late than never.
So far, which years have been the best years in your life? What have you done during them?
2012 my dandy walker girl was born
2015 her little sister was born
What would you like to do if you didn’t have your condition?
What i like to do if my girl didnt have this syndrome. Hmm.. Just continue enjoying life like any others.
If you had to describe your life in a sentence, what would it be?
Its crazy but i like it. :D
Finally, what advice would you give to a person in a similar situation?
Never give up
And.....
Never eveeeer give up!!
