Alea Begum didn’t know who to turn to for help when her 12-month-old baby was diagnosed with a rare condition that led to brain damage and blindness.
It was a nightmare every parent would dread. But for Alea, it was real.
“I was in complete shock,” Alea recalls. “I felt numb—like I was in a bad dream.
“It was a very difficult time for me and my family.”
Three years on and Alea has completed training as a volunteer with the disability charity Scope and is helping to launch a support group tomorrow in London’s East End for other parents with disabled children.
She is one of five new volunteers getting certificates at the launch at Whitechapel’s Osmani centre, part of a Face 2 Face nationwide scheme which offers families emotional support, practical guidance and even home visits or online and telephone help.
It all started for Alea when her baby girl Khadijah was diagnosed with Argininosuccinic Aciduria, which led to brain damage, lost sight, developmental delay and epilepsy.
“It can be challenging looking after her,” Alea admits. “She has seizures every day and needs constant supervision and help with things like playing and walking. She likes to explore, but always needs support so she doesn’t hurt herself.”
Alea didn’t know anyone where she lives in Bethnal Green who she could turn to.
“I felt alone when there were times I needed to speak to someone who understood,” she added. “I didn’t know anyone with sight impairment and would have loved to have had someone to listen to me, empathetic to all the things I was facing.”
Parents often feel alone when they’re juggling with a job, housework and medical appointments for their child, with so little time left for themselves.
Every befriender the charity recruits, like Alea, has a disabled child and knows what it’s like getting through the worrying and confusing experience. They empathise.
Yasmin Mumith who is co-ordinating tomorrow’s East London support group launch, explained: “It’s difficult to know where you turn to. You worry about what the future might hold for your child.
“Navigating your way around medical terms, doctors’ appointments and trying to get the right support is a real challenge and you’re under enormous pressure.”
Research by the Scope charity reveals that almost half the parents with disabled children have been to their GP with stress and worry. Most reach breaking point because they can’t get the emotional support they need, the charity points out. This often results in depression or family separation.
Many said that talking to other parents with disabled children was an important source of support. So the charity urges struggling parents to get in touch with Face 2 Face, even if they simply want practical advice on getting support.
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