“I hope that Noah’s Ark’s support never ends so that we can go on as a family to enjoy life. It makes us feel special even when life is hard. Noah’s Ark is like my family, they’re always there if I call’”
After six months, Betul started to suspect that her first child Gulirem was not developing as she should have been. That’s why she took her into hospital for tests, where she was diagnosed with the rare blood disease Diamond-Blackfan Anemia.
The results of the test in hospital proved a catalyst for months of time spent in and out of hospital, during which she had to have an operation to stop her vomiting and eventually a peg to feed her.
Betul was initially sceptical about whether Noah’s Ark would really be able to help her at all. Even after meeting with our team, she couldn’t quite believe that she’d be entitled to such a range of support: “What was I doing without Noah’s Ark?! Life was much more stressful before they came into my life.”
The first thing that she mentions are the Noah’s Ark family days, which give Betul and her family the opportunity to spend time together. The last one that she went on was to Willows Farm:
“You can just go around and Gulirem can feel the animals. Even though she can’t see, she loves to do that. And her brother Hamza loves them too, he’s happy, laughing smiling. When you have a child with special needs it’s hard to give attention to the other child – but this means that we can spend time as a family together.”
There is a specialist carer who comes to support the family fortnightly and does whatever Betul needs her to do. The thing that she says is most significant for her is that Noah’s Ark staff are brilliant at playing with Gulirem, because “it’s not just a job for them”. It means that Betul can spend a bit of time with her other child, Hamza. This is also true of our children’s days, which facilitate Gulirem to have a whole day out, meaning that Betul can dedicate her time exclusively to her other child. The fact that Noah’s Ark provides transport to these days is so important for Betul – it means that she doesn’t need to worry about anything, particularly as Gulirem’s wheelchair is so large.
Hamza also has a volunteer from Noah’s Ark to support him. As Betul says: “Hamza looks forward to seeing his volunteer. He would previously have been angry, but having the extra support means that he’s better able to talk stuff through. He’s also had music therapy through Noah’s Ark and it’s significantly improved his behaviour – he’s much better able to express himself now”.
“The volunteer brings toys and Hamza chooses whether he stays in or goes out. It’s really his special time. If I spend a minute or two with the volunteer having a chat, Hamza is unhappy – he knows that this is the special time dedicated to him.”
But it’s not only the emotional support that has been so important, Noah’s Ark has also provided the family with practical support too, such as help with filling in forms or writing to the housing association about a broken lift in her block. Betul knows the importance of the lift working; when it’s broken it’s almost impossible for Gulirem to leave the house, which has meant that in the past they’ve been stuck indoors for weeks at a time.
Gulirem is almost nine now. She has gone a few years without a blood transfusion, but her anaemia is compounded by her epilepsy. Despite her impaired sight and physical movement, she’s a very vocal child who loves going to school. When she receives her birthday presents from Noah’s Ark, her face lights up. Despite her disabilities, Gulirem has always felt comfortable and at home with Noah’s Ark’s carers’ support.
Betul is particularly excited about the move to The Ark. She says it will ‘be like my home’. Noah’s Ark will be providing services for families like Betul’s from The Ark later this year.
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