Posted on 16.06.2021
Haniya and her family are supported by Acorns Children’s Hospice, though Mum Shabana was initially hesitant, feeling it might not be right for her, but now it’s a favourite place to go and Haniya always has a smile on her face.
“I thought it wasn’t somewhere for Haniya, she wasn’t at that stage yet, but when she was two it was explained that Acorns wasn’t just for children who are at the end of their lives, so we went for a visit. I thought it would be a hospital environment, so I was shocked when I walked in, it was like we were walking into a house,” explains Shabana.
Haniya is the youngest of Shabana’s four children and when at about 10 months she wasn’t able to hold her head up, the family were concerned, so they consulted a doctor. “A muscle specialist checked Haniya over and said her muscles were really strong and healthy, but they wanted to do an MRI scan. The scan showed some disorders in her brain and they told me she had Leigh Syndrome, which means the nerve junction in her brain that sends energy through to the rest of her body is damaged.”
Haniya is very fragile – 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. Acorns has become somewhere they look forward to spending time together, while Haniya can receive therapies such as sessions in the hydrotherapy pool and Mum can enjoy some respite:
“All of my focus every hour of the day is on Haniya so bringing her to the Stay and Play sessions at Acorns is wonderful and she loves it too, it’s such a happy environment. 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, I don’t know what I’d do without them – they help us build beautiful memories with Haniya,” she said.
By supporting Childlife, you are helping families like Shabana’s to receive the care and support they deserve at Acorns, and during the toughest of years for everyone, this has been more important than ever. Thank you.