'Every day was a struggle, normal life as I knew it no longer existed'
PUBLISHED: 15:01 23 May 2015
Rahna Nabi's daughter Husna was eight when she was diagnosed with Friedrich's Ataxia (FA), a rare inherited condition which progressively damages the nervous system and heart.
She said: “[I was told] Husna would gradually deteriorate, lose the use of her legs and arms, become blind, deaf, lose the ability to eat, swallow and speak until eventually she becomes completely incapacitated.
“There was nothing we or anyone could do as there was no known cure for the disease.”
“For a parent there is nothing worse than being told that your child will die slowly before your eyes, and you will not be able to do anything, apart from helplessly watch them waste away. It felt like a heavy, dark and grey cloud had descended over me and my world had fallen apart.
“There was so much to deal with and so many things to sort out. I was dealing with my own emotions and everybody else’s.
“Every day was a struggle, normal life as I knew it no longer existed.
“I was unable to share all my feelings with the people around me because they were too emotionally involved and I was seen as the strength holding everyone up.
“Although everyone was being so kind and helpful, no-one really understood what I was going through. I remember at the time desperately wanting to speak to another parent of a child with FA.
By the age of 10, Husna had completely lost the use of her legs and had to use a wheelchair.
Now 15, she needs 24 hour care and supervision, as she is losing her eyesight and is now partially-sighted.
Her swallowing has also been affected and she chokes on food, drink and even her own saliva.
Her speech has begun to slur, her hand coordination has become poor and she is generally extremely weak resulting in constant tiredness.
Rahna said Husna also has Asperger’s Syndrome, and can panic and become extremely anxious with any changes to her routine.
“Parenting a child with such complex mental and physical health issues is mentally, physically and emotionally exhausting,” she said.
“The day never comes to an end, it just merges into the night which merges into the next day. It’s like sitting on a roller coaster ride that has no stop button.”
Now Rahna is training as a befriender for Face 2 Face, a new befriending service aimed at offering emotional support and practical help to others in a similar position.
The national scheme has been started by the charity Scope to help families facing the struggles and pressures of looking after disabled youngsters.
“I personally could have benefitted tremendously from a service like Face 2 Face had it been available,” she said.
“There were times when I was feeling very low emotionally and needed to speak to someone who understood.”
According to the charity’s research, four out of five parents “reach breaking point” because they can not get the support they need, often leading to depression and separation.
For more information about how Scope’s Face 2 Face service could help or to volunteer to become a befriender please contact Andrea Wershof or call her on 07436 831217
Alternatively visit www.scope.org.uk/face2face.