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Hani

Among the families looking forward to The Ark's opening day are Nida and her nine-year-old son Hani.


"The Ark is going to be amazing," says Nida. "I know my son will be in safe hands and I'll be thrilled for Hani to attend. On the day it opens, Hani will be right there!"

Hani has leukodystrophy  - a rare, progressive, genetic disease that affects the brain's white and grey matter, spinal cord and nervous system. Hani's condition was diagnosed when he was four months old, which for Nida meant discovering that Hani would be unable to talk, walk or sit unaided and that he would need to be tube-fed. His weak immune system means he suffers chest infections that require frequent spells in hospital.

"He's such a happy boy, and very charming."

In spite of his many challenges, Hani shows an amazing positivity of spirit, which is shared by his close family  - dad, Waleed, young brother, Adam and baby sister, Maryam. Hani attends school five days a week and enjoys spending his time in his sensory room at home  - he particularly loves music. Says Nida, "He's such a happy boy, and very charming. He's chatty. He can't talk but he communicates by making sounds and using facial expressions  - especially his smile. He only cries when in a lot of pain."

"I cannot put into words how amazing you guys are!"

While looking after Hani can be tough, Nida is philosophical: "We take it as part of our lives. Hani's not a burden to us; he is a very lovely child."

The family was introduced to Noah's Ark in 2010. "I cannot put into words how amazing you guys are!" says Nida. "I don't have to show Noah's Ark carers anything or worry when I walk out of the room. It's just so nice to see their natural feeling for our children."

"That's the place Hani should be going."

Once The Ark is up and running, the music and sensory sessions will be a big draw for Hani. "He will love that; he just loves being out of the house and trying new activities. When I heard about The Ark, I said that's the place Hani should be going."

HELP US BRING THE ARK TO LIFE

Together we built The Ark. Now help us bring it to life for children like Hani.

Alternatively, you can donate £10 by texting NOAH002 to 70191

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