Haniya has a life limiting condition but that doesn’t stop her from being the happiest little girl, her whole family gets support from Acorns Children’s Hospice
Happy little Haniya is the youngest of four children. Her mum Shabana says she’s a ‘little angel is who loved by everyone’. She enjoys being around people and loves having her photo taken – you’ll always get a smile for the camera.
Haniya was delivered early at 37 weeks via c-section due to limited movements in utero but Shabana wasn’t concerned. It wasn’t until she noticed Haniya wasn’t reaching certain milestones that she thought there was a problem.
Haniya wasn’t lifting or holding up her head. Doctors shared Shabana’s concerns and referred Haniya to hospital. Initial assessments suggested a muscle disorder might be the cause. But an MRI scan revealed brain abnormalities, which specialists now believe is Leigh Syndrome, a rare neurometabolic disorder that affects the central nervous system.
“When we first heard about Acorns I thought, ‘a hospice, no’. It was too early for me at the time. But the palliative care nurses saw how hard I was working and knew how much support I was missing out on. I just needed to see it for myself. I thought it’d be a hospital. But I was shocked to walk in and see carpet on the floor, like you’re walking into a house. Everything was nicely decorated. It was like a home. It even excited my kids.
“I locked myself away at home with Haniya. But coming to Acorns pushed me to go out. We started with the Stay and Play groups and I’d put them in my diary as appointments to make myself go. Now it’s a second home to me. I don’t need to be closed off or scared.
“Acorns isn’t just there for me and Haniya. Acorns is there for all of us. I’ve got three other kids and I can’t give them time because I’m with Haniya 24/7. I feel guilty about that. But Acorns is a place for them too. We love the family swims and my other daughters get sibling support. I can’t take Haniya to a public pool, so my girls love coming here with her. It’s helping to make a lot of memories.
“Acorns have changed my state of mind. I don’t know what I’d do without them, they’re there for me no matter what.”