Twenty year old Nur lives with her family in London and has fucosidosis, a rare metabolic storage illness which means a particular sugar in her body isn’t broken down correctly and slowly poisons her.
She also has juvenile idiopathic arthritis, which means her joints are often swollen, and she’s in a lot of pain. She had a double hip replacement at 15 and is currently waiting for her knees to be replaced. Her condition affects her body and brain, causing learning delays. Mentally she is about six years old but enjoys communicating and can express herself well.
Her Mum tells us: “Despite the pain she is often in, she never complains and just gets on with her day, which is admirable. She loves being outside and socialising, and she enjoys going on holiday and seeing new sights.
“If she is having a tantrum outside, people will stare and not understand her behaviour. She is often in a lot of pain because of her arthritis. A tantrum is her just expressing that pain.”
“Our day to day life revolves around Nur, her needs and what makes her happy. Not all places are wheelchair friendly, so we have to ensure the place is accessible beforehand. Because Nur is limited in the places she can go, her siblings can’t go either as they need me, which is difficult for them.
“I am not only Nur’s mum, I’m also her carer and have to ensure she is taking all the different medications every day. The medication she takes weakens her immune system, which leads her to be ill quite frequently. I constantly have to make sure she isn’t too hot or too cold as she can’t regulate her own temperature. Getting her up in the morning is the most challenging part of the day. Because of her sleeping position her body is stiff in the morning again causes her pain.”
Family Fund support
“We received a lightweight wheelchair through the Your Opportunity scheme, which has been life-changing.
“I have to take Nur to appointments and fold up the wheelchair, in and out of the car. With the new one it’s much easier for me to do as it’s a lot lighter. Her previous wheelchair was much heavier, and it hurt my back having to move it around.”
“The grant has allowed us to go out more frequently and easily. It’s possible for Nur to wheel herself because the wheelchair is lighter. Her wrists don’t hurt as much, as they are quite fragile so the wheelchair has given her a lot of independence.”
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