Two Preston parents have launched a fundraising battle to help care for their daughter after she was diagnosed with a debilitating disorder.Advertisement
At just 11 months old Safaa Master was diagnosed with a tumour in her back and despite having it removed she developed Opsoclonus-Myoclonus Syndrome (OMS).
OMS currently affects around 30 people in the UK and means Safaa, who will be three in April, cannot stand, walk, talk and has to be fed through a tube in her stomach.
Her parents, Hussain and Halima, had their lives changed forever when doctors told them the news.
Hussain, who works for a charity in Fishwick, said: “We thought it was just teething problems. She was not sleeping, crying and she was not very well. But then it just didn’t stop after a week or so, and we took her to hospital.
“I was at work, coaching the junior football team with Fishwick Rangers and my family took her in. I got the call and just couldn’t believe it. You don’t expect your daughter to have a tumour, especially at that age.”
Since then both Hussain and Halima have been caring for her round the clock.
Hussain said they have learned to cope with the sleepless nights and are trying to take something positive out of what has happened.
He said: “We just do it now, you get used to it. I just want her to be looked after so we have decided she needs some care.
“We put her into Rainbow House and it’s amazing. I can’t praise all the staff at the hospital and Rainbow House enough. But now we need to make sure she can be looked after and we have to pay for this.”
Safaa’s care is round-the-clock and she needs specialist sessions to help her to learn to walk, but it comes at a price.
Her care costs around £3,000 a year at the Ormskirk based Rainbow House and Hussain is undertaking his own personal challenge to help raise this money.
“I’m going to run from Blackburn to Preston, and then swim a mile as well,” he said, “while my wife is going to take part in the Rainbow Ramble which is an 11-mile charity walk.”
They have already received over 100 donations online via their Justgiving page, with nearly £3,900 raised already – but that will provide just one year of care and support for Safaa.
Hussain said: “I don’t want to keep asking each time, so we want to try and raise as much for Rainbow House in one go.
“I hope people reading this can find a little bit of money to help Safaa.”
Hussain said they had been researching OMS, and had been in contact with families in the US who also had children who had developed the disorder.
“It’s good to talk to people going through a similiar situation,” he said, “and they mention there is a doctor in the States who is a specialist, but we have no plans to take Safaa to see him. Not at the moment.”
Hussain’s run and swim will take place in March, and you can donate to Rainbow House and Safaa’s appeal online via their Justgiving page.