Habibah

Assistive technology for children with disabilities can open up a world of independence and inclusion. For 18-year-old Habibah, it has made it possible to bake, study and express herself despite living with a life-limiting muscle condition. Just days after doctors were discussing end-of-life care, Habibah was back doing what she loves most. She was judging a gingerbread competition, showing how the right support and technology can help young people defy expectations and live life to the fullest.

Assistive Technology for Children with Disabilities: Habibah’s Inspiring Journey

As Habibah Tariq judged a competition with Great British Bake Off finalist Josh Smalley, no one would have guessed that just a week earlier she was facing end of life care.

With a smile on her face and a wicked sense of humour, she took on the role of Prue Leith, judging gingerbread houses at the CIBC Miracle Day.

But for the brave teenager, who has defied the odds through the years, this was just another challenge she had to face.

Habibah has Merosin Deficient Muscular Dystrophy, a progressive muscle-wasting disease that currently has no cure. She wasn’t expected to live past the age of 15, but this October she celebrated her 18th birthday.

She is a keen baker and uses Lifelites Switches and iClick system technology to control the whisk to enable her to bake. Her cakes have even attracted the attention of Bake Off star Paul Hollywood.

Habibah achieved nine GCSE’s and is going on to study A’ Levels in law, psychology and sociology, as she wants to train as a counsellor to help others in her situation.

Her mum Salma, 40, said:

“She is just a miracle, I’m so proud of everything Habibah has achieved, she never gives up, she just keeps on fighting.”

Living with Merosin Deficient Muscular Dystrophy

Salma, from Maidenhead, Berkshire, told us how, when her daughter was three months old, the family started to notice that things were not right.

“She is our eldest child and when she was three months old, my mum picked up that her head control wasn’t as it should be. We saw the GP, they picked up a hip dislocation and started looking at that.

“We went back again a few months later as we knew she wasn’t reaching the same milestones as other children her age. She was diagnosed at nine months-old with her condition. She was the first child in our family to have this, so we had no awareness of it and we didn’t know what to expect.

“We were told she would be a wheelchair user for the rest of her life and as she got older, she would develop various health issues including respiratory conditions and Scoliosis and she wouldn’t live beyond 15.

“Initially it was a real shock for us, we did some research to find out more. Habibah has always been really positive. That has helped us get through her diagnosis and we’ve learnt so much, it has changed us and our perspective of life.”

Salma said when Habibah was five, she was no longer able to swallow her food correctly and as a result was no longer able to eat.

“That was really hard as she wasn’t able to join in and eat at mealtimes. Every time things changed we didn’t know how she would adapt to it but she did really well adapting to being peg fed.”

“Despite her physical disabilities, the condition has not affected Habibah cognitively. In year two, she was recognised as a gifted child and in year six, she got the highest SATS results in her class.

“We couldn’t have asked for a better child for the way she has handled everything. It’s difficult to see her go through challenging periods but Habibah has never let her health condition hold her back, she’s always achieved as much she can.

“One of her greatest supports is her father, Imran, 45. He gave up his career as a scientist to be there to care for her and support her. That’s what’s really helped and she has a really great support network.”

Technology That Supports Learning, Creativity and Independence

Habibah was introduced to Lifelites technology as she was supported by Alexander Devine Children’s Hospice in Maidenhead. This is where she found her love of baking.

She also uses the Eyegaze technology and loves to play on the Magic Carpet with her siblings.

Habibah said:

“I was introduced to the Lifelites Switches and iClick system and was able to be in control and bake, which I loved. Baking gives me enjoyment and happiness.”

Her bakes at the hospice caught the eye of Paul Hollywood as he replied to a post on X about Habibah, praising her bakes, which she was super excited about. Last year, she formed a friendship with 2023 Bake Off finalist, Josh Smalley, as he baked with her at the hospice for a Lifelites project.

She said; “It was an amazing moment meeting Josh as I’m such a big fan of the show, I was starstruck.”

Defying Expectations and Looking to the Future

Salma said: “She sat her GCSE’s a year later than she should have as she was unwell at the time but she got nine which is amazing.”

One of the biggest achievements was Habibah reaching adulthood at 18. It was a moment her family, which also includes siblings, Mustafa, 15, and Zunara, 12, never thought they’d see.

The family decorated the house for a party to celebrate. Habibah had a gorgeous birthday cake and was gifted a digital camera for her to use for her Instagram, where she chronicles her journey and the Lifelites blog she writes.

Salma said: “It was a really emotional moment for Habibah to reach 18, we are so proud of her. When she was given her diagnosis, we were told that to reach the age of 15 was very rare so to reach 18 is brilliant.”

Habibah is very philosophical about her journey is life and said:

“I’ve never let anything hold me back. I’ve always achieved what I can and I’ve never used it as a reason to affect me.”

But ten days ago, she was so unwell that doctors were discussing end of life care after she was taken into hospital with a chest infection and medics believed she suffered a heart attack.

Salma said: “For her to go from discussions about end-of-life care as she was very unwell to push through, come out of hospital on Sunday evening and then judging the competition on Wednesday, no one could tell she’d been so unwell.

“Like always, Habibah proved the doctors wrong and has recovered and is back doing the things she loves.”

Why Assistive Technology for Children with Disabilities Matters

Salma said that having access to Lifelites tech and the support she gets from the charity had really helped her maintain a positive attitude.

“It makes a huge difference to Habibah and families like ours having access to the technology.  If she hadn’t been introduced to the iSwitch, she wouldn’t be baking as she is now. She plays games on the Eyegaze and doesn’t have to use her hand and she’s able to do things she wouldn’t be able to do if the tech wasn’t available, it’s so important.”

Josh Smalley, 2023 Bake Off finalist, said; “Baking with Habibah is always such a joy. Earlier this year, we celebrated the 25th anniversary of Lifelites together, using their assistive and sensory technology to help her take full control in the kitchen. We used Switch technology, powering the stand mixer and Eyegaze, allowing her to operate the computer with just her eye movements. We went onto create the most beautiful rainbow cupcakes. Habibah’s creativity and determination are truly inspiring. Like me, she loves bright, bold colours in her bakes. By supporting Lifelites, we can help more young people like Habibah have access to the technology that enables them to take part in activites, bake, learn and express themselves.”

Rob Lightfoot, CEO of Lifelites, said: “Habibah is an inspiration to us all at Lifelites and a brilliant example of how our technology can enable children and young people to achieve things that would otherwise be impossible. Every setback she’s faced, she’s met head on and used technology to live the best life she possibly can.”

Amanda Stocks