A mum whose daughter has SMA has revealed she was told her baby would “waste away” but she’s now 29.
Imtiyaz Begum first noticed something wasn’t right with her daughter Sanah, when she was one.
Sanah wasn’t walking like other babies and she could only move by holding onto furniture with both hands.
Aged two, Sanah was diagnosed with spinal muscular atrophy type two (SMA), a rare genetic condition that causes progressive muscle wasting.
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Doctors told the 55-year-old that there was no treatment at the time and that Sanah would slowly get weaker.
“When she was little, Sanah kept getting weaker and stopped walking holding onto things and at age three and we got worried,” Imtiyaz, from Wolverhampton, told Need To Know.
“I’d never heard of SMA, what it meant or what was going on.
“When she was diagnosed, it was too much to take in.
“It was really heartbreaking, I didn’t know how to process everything they said.
“She’s my firstborn as well.
“Doctors told us it was a muscle wasting condition, there was no treatment and that she would get weaker slowly.
“It was difficult and I went into depression.
“I had to adapt to becoming a carer.
“There are ups and downs but you get through it.
“I feel now I am stronger, I could have done a better job and I feel like I haven’t done enough.”
Sanah’s sister Zaynab, 25, was also diagnosed with SMA type three, a milder form.
Sanah lost mobility completely when she was 12 following surgery on her spine and has relied on an electric wheelchair since.
She also has carers to visit four times a day and her mum is her main carer throughout the night.
Sanah added: “I didn’t feel that different growing up because I went to a special needs school where everyone around me was disabled.
“I could get around myself with a walker, by crawling or my tiny power chair.
“Then at 12, I was fully dependent on a chair because I developed severe scoliosis and had to have surgery on my back.
“Since then, I couldn’t do anything myself like go to the toilet or shower.
“I had the mental capacity but physically it was gone.
“I go to the hospital every six months for breathing tests and I do physio at least twice a month.
“And I can’t cough if I have a chest infection.
“I have carers in the morning to help me shower and dress.
“We’re fighting to get 24-hour care because my mum does the night care and it’s tiring for her.
“Every day looks so different in terms of pain.
“My life is a rollercoaster. I have chronic fatigue and I crash at around 5pm.”
The first approved treatment for SMA became available to NHS patients in England in 2019.
Sanah underwent treatment for three years, but made the difficult decision to stop after the side effects worsened her psoriasis.
Despite needing help to do everyday tasks like showering and changing, Sanah graduated from university where she studied film and went on to work as an editor and artist.
Sadly, she had to quit her job last year ago due to her health.
Former Little Mix singer Jesy Nelson revealed last week her eight-month-old twins Ocean Jade and Story Monroe were diagnosed with SMA type one.
Imtiyaz and Sanah said following Jesy’s journey has brought back emotional memories and they are sharing their story to highlight how crucial early testing is.
Imtiyaz said: “Watching Jesy Nelson speak has been very emotional.
“There were no tests or treatments when Sanah was diagnosed and early testing is so important so children can live a better quality of life.
“There was nothing like that when I had Sanah.
“I was so confused and I didn’t know what was happening in my life.
“If there was treatment, it would have made a difference.
“I want to tell Jesy and other parents of children with SMA that they’ve got this.
“Your children are amazing. They’re going to do great.
“They’re just going to need the support.
“If you can do it, they can do it.
“Stay strong and believe in yourself and believe in your children.
“They can achieve many things in life like Sanah has.”
“I always taught her she was no different and to be independent.”
Sanah added: “It’s being emotional following Jesy but parents have been fighting for years for early testing.
“Her babies are nine months and that’s a long time for the condition to progress so they’ve already lost so much.
“It’s amazing that she’s talking about it and spreading awareness.
“Everyone knows what SMA is now and I think the newborn screening will happen sooner because of Jesy pushing it.
“Her children will be amazing and she’ll be a great mum.
“SMA doesn’t affect your mental strength so they’ll be strong.”
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