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Is it possible to see Amarah and not smile? Her mum doesn’t think so, and we agree.
“She makes friends wherever we go. I’ll be in the supermarket and she’s chatting away to someone! I only have to wake up and see her face to smile.”
A few days after she was born, Amarah’s doctors noticed that she had different features to her parents. She had a flatter nose and almond-shaped eyes, and soon after she was diagnosed with Trisomy-21 – more commonly known as Down’s syndrome.
Anisa said: “I was in shock and denial, because you just don’t expect it and I was uneducated about what it meant for us. I just kept thinking that it wasn’t true – but now it doesn’t matter to me. All that matters is her health. She’s my baby.”
For World Down Syndrome Day (21 March) Amarah’s mum Anisa is sharing their experience with the condition, their healthcare support and her advice for parents, carers and healthcare professionals.
Anisa said: “Amarah has qualities that other babies don’t. I think she has stayed more innocent for longer and each milestone she reaches is more precious, because she has worked for it.”
“When she was a baby, she saw a physio who worked on play skills with her and now the play specialists and speech and language therapy team at Sheffield Children’s have been helping with her Makaton too. Everyone here is so understanding with her.”
Amarah has been in and out of Sheffield Children’s for most of her life. As well as living with Down’s syndrome, she has had problems with her bowels. This has meant she has needed surgery several times including having a percutaneous endoscopic gastrostomy (PEG) feeding tube put in place to help her take in food and drink better. Amarah also needed an ileostomy, which connected the last part of the small intestine to the abdominal wall, and colostomy surgery. This diverts part of the bowel through an opening in the tummy, and connects the colon to the abdominal wall.
Anisa said: “The surgeons were amazing, they know her so well and they put 100% into everything, they’re brilliant.
“The staff on Ward 1 are amazing too! I can’t fault them one bit. Because we’ve been in and out so much it’s like coming home to our family, it’s a lovely thing because we feel so comfortable with everyone. I don’t leave her when I’m here, but if I did need to I know she’s in the best hands.”
To help make sure that our staff know how best to care for Amarah, Anisa has a hospital passport which she keeps with her during hospital stays. This passport is available to download from our website, and explains any additional needs that a patient might have. You can find out more about the passport and other support available when visiting the hospital for children with a neurodisability or learning disability in the Patients and Parents area.
Anisa also has some advice for parents and carers, who might just be learning that their child has Down’s syndrome.
She said: “Don’t be scared. It’s the best feeling ever to be Amarah’s mum. To embark on this journey, it’ll be full of fun. She’s so special and pure, like a little angel, and she’s so loved by the staff at Sheffield Children’s – they always come in and see her!
“It’s the best journey you’ll ever go on, you’ll learn so much.”
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