- Coffin Siris Syndrome
- Interviews
Neama .. my baby daughter is affected's interview
How did all start?
It's my baby daughter
Starts with all her fifth digit fingers and toes missing or incomplete
And later by her completion of 15 months and yet not able to walk talk or even eat and frequently getting admitted and antibiotics always
Do you already have a diagnosis? How long did it take you to get it?
Coffin siris
It took them 14 months to diagnose her
For what medical specialties have you been treated? What has been the most useful specialty for your?
Nothing yet
It depends usually of what she's having atthr moment
What has been the most useful thing for you so far?
Praying and taking care of her whenever she's Sick run to the hospital never miss a medical condition or medicine
What have been your biggest difficulties?
Seeing her sick all the time and have nothing to do
How has your social and family environment reacted? Have your social or family relationships changed?
Yes
I can't go every where with her i have ro be careful she's getting affected v fast
What things have you stopped doing?
Nothing yet
What do you think about the future?
Everything is in gods hands
She's my daughter i love her before and now
I will take care of her and pray
My daughter will live longer than me not the opposite way
So far, which years have been the best years in your life? What have you done during them?
Still she's not living as a healthy baby as she's always getting admitted
What would you like to do if you didn’t have your condition?
Live
If you had to describe your life in a sentence, what would it be?
Live your life you are not dead
Finally, what advice would you give to a person in a similar situation?
Knowledge is a key
Read ask know more
But still live and laugh and go wherever you want
Don't kill yourself alive
