2024-01-04 10:11:36
We met Mohamed, father of two children suffering from cystic fibrosis. Between doctor’s appointments and daily medication, he tells us regarding the daily life of a parent of a sick child.
The article below is the transcript of the associated video interview.
Can you introduce yourself ?
I am the father of two children with cystic fibrosis. The first, aged eight and a second, a girl, aged four. For the first, I found out two months following his birth and for the second, we found out from his birth.
What is the daily life of a parent of a sick child?
Daily life is very difficult, because we are busy all the time. Already, there is taking the medication, and then the doctors, so there is the physiotherapist, who is present every day except the weekend, unless they really need another session at the weekend. But otherwise, they rest on the weekend.
There is a story that happened to my son, the first, who had a lot of complications. He’s had surgery quite a few times, and once at school he was playing and accidentally his shirt came up. The other children saw these scars and started making fun of him every day. It was really very difficult for him.
What is one thing that is difficult for you as a parent?
As they are very young we cannot really answer certain questions. For example, they say “why am I sick, why do I take medicine and others don’t?”
They are still doing research, we hope that it will respond to their mutation.
The only thing I might say, it’s regarding not giving up. You have to be strong, you have to have hope. That’s all.
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#Living #Everyday #Cystic #Fibrosis #Testimony #Courageous #Parent
