After a normal pregnancy, Hafzah’s parents were shocked to see her turn blue during a feed. Eventually diagnosed with the rare disorder nemaline myopathy, Hafzah now needs help with her breathing and has a feeding tube. Yet, with our support, she’s flourished and is now almost a teenager.
Hafzah was born in Halifax in October 2004. After a normal, healthy pregnancy, it was a shock to her parents when, one evening during a feed, Hafzah began turning blue. They rushed her to hospital, but things escalated very quickly on arrival: Hafzah became unresponsive and needed resuscitation. Once she was stable, she was transferred to Leeds General Infirmary.
“When we got there, the doctors did a video fluoroscopy, which looks at swallowing, and they discovered that Hafzah didn’t have a swallowing reflex,” explains Shagufta, her mum. “So anything that went into her mouth was going straight into her lungs.”
Diagnosing a rare condition
Hafzah was diagnosed with nemaline myopathy, a rare disorder which also affects muscles and could cause further complications for her as she grows up. The diagnosis also means that Hafzah now needs help with her breathing, and a feeding tube.
“We were devastated. There had seemed to be nothing wrong with her at all, yet now we were being told that Hafzah probably wouldn’t make it to 3 years old. And if she did, she wouldn’t be able to walk, talk or do anything for herself. But something inside told us not to give up, and we treated Hafzah just the same as we treated our son, who’s 4 years older."
Hafzah's parents were determined to help her progress. At 6 months, she was already sitting up by herself, defying the consultants' expectations. At 18 months, her family started teaching her sign language, because the muscles in her throat couldn’t support speech. And at the time of writing, she’s nearly 13!
Meeting Forget Me Not
In August 2016, Hafzah was referred to us by her community care team. “The support we’ve had has been great," says Shagufta. "It can be hard to juggle everything from meal time to school, homework to days out, but they really help us make the most of our time. Hafzah often goes to Russell House on weekends, which gives her a change of scenery and the chance to meet new people. It also lets us get on with jobs around the house, or just have a cup of tea and relax for a few hours.
“Hafzah likes listening to music and going to the cinema, so we help her enjoy these activities as much as possible. As she approaches her teenage years, we’ll continue to count on the support of Forget Me Not, and I want to make sure she can enjoy doing things any teenager would. We’re looking forward to the future, and we’re thankful to have so much help from the hospice."