There for her and me
Happy little Haniya is always smiling. Hear how Acorns cares not just for Haniya, but for the whole family, from her mum Shabana.
Haniya is my angel. She’s always smiling away, no matter what, and as you can see she loves having her photo taken. She’s the baby of the family, my fourth child. I had a normal pregnancy with her and although she was born by Caesarean section at 37 weeks, she was fine.
But there came a stage when she was about 10 months old where I noticed she wasn’t able to hold her head up. It was quite floppy. My auntie kept saying it wasn’t normal and wasn’t like her boys who were a bit younger.
I decided to take her to the doctors, just to be sure. A muscle specialist checked Haniya over and said her muscles were really strong and healthy. But they wanted to do an MRI scan which was really scary to hear about my baby.
When the doctor went through the results, I cried a lot. The scan showed some disorders in her brain and they told me she had Leigh Syndrome. It means the nerve junction in her brain that sends energy through to the rest of her body is damaged.
As soon as I got home, I did what we all do and went on the internet. That just made me cry more. Children with Haniya’s condition don’t usually survive past their third birthday. We just take each day as it comes and think of the positives. It’s all in God’s hands.
Haniya is very fragile and delicate in certain ways. She has a deep spinal curve which is getting worse because she isn’t able to hold herself up, and her right lung is 95% collapsed. Despite that, she’s very alert and smiley.
We first heard about Acorns through our palliative care nurse, but I thought that wasn’t a place for Haniya, she wasn’t at that stage yet. But when she was two it came up again. It was explained that Acorns wasn’t just for children who are at the end of their lives, there was also lots of support for families like mine.
I agreed to go and have a look with my husband and kids. I thought it’d be a hospital environment with rows of beds and nurses in uniform. But I was shocked when I walked in, it was like we were walking into a house.
We were shown the flat, which was really nice and somewhere for our family to stay. It even excited my kids, it was homely.
Coming to Acorns gets me out of the house. All of my focus every hour of the day is on Haniya so bringing her to the Stay and Play sessions is wonderful and she loves it too. It’s such a happy environment to be in and I get to meet other parents.
Acorns isn’t just for the children, it’s for the whole family.
They’ve helped us so much and it’s opened a lot of doors for me. I used to stay inside and didn’t go out much. But with Acorns, I come to the mum’s group and I’ve got a Family Team Worker who is there whenever I need her. You can talk to staff as openly and as much as you want.
At Acorns I’m my own person. I’m myself. Their support means so much and It’s made me more lively and happy. I don’t know what I’d do without them. They help clear my head and build beautiful memories and moments with Haniya.
If the day comes when Haniya deteriorates and we don’t want any more treatment, we know we will have Acorns. For now, we’re just enjoying the memories we make with her.
Shabana
Haniya’s mum
