Sarah Wilson has a difficult job looking after her two disabled children but she wouldn't swap her life for anyone's. Here's why.
"MY boys aren't just living with spinal muscular atrophy, they're surviving it."
These dynamic words are how wonder-mum Sarah Wilson describes her eight-year-old twins, Sam and Alex Bolton.
"They'll never be able to walk and I can't change that," says the 46-year-old from Littleover. "But making their lives busy, fun and fulfilled is what is important to me."
Sam and Alex celebrate their ninth birthday this month. They're a pair of smiley kids who have a gang of good mates. They like school, love drama and soon they hope to start playing wheelchair football.
They have also got a genetic condition called spinal muscular atrophy type 2, which causes the spinal cord to deteriorate and breaks the link with the brain and muscles.
"I could tell you all the things they can't do," says single mum Sarah. "But I'd really prefer to focus on the positives.
"To be honest, they are the envy of their friends," she laughed. "They've met One Direction and David Walliams and we've got the pics to prove it."
Sarah's life revolves around her sons. While they are at school – Griffe Field Primary – she crams in some secretarial work. Then, when they get home, her time is theirs.
She says: "I hear the taxi pull up on the drive and the boys are chattering as they make their way in. They are always full of it after being at school. It's lovely to hear them. They're just typical boys. They get on, then they don't. They play together, then they don't."
Their diagnosis hit Sarah hard but that was a long time ago now. They were just 18 months old. Although she suspected that they had some kind of developmental delay, nothing had prepared her for what she was going to be told.
"They had SMA," she says. "It just meant baby milk to me. I had no idea that it was also the initials for a condition called spinal muscular atrophy. I was told that they would never be able to walk and I grieved for the active children I'd lost."
Facing a future with wheelchairs and doctors was almost too much to bear.
"It wasn't easy," says Sarah. "My whole life changed and, for a while, I didn't know where to turn."
Then she did the right thing. She picked herself up, brushed herself off and started giving her two children what they needed –- practical support and buckets of love.
She says: "We have so much fun and the boys have done some wonderful things.
"I'll never forget when they met One Direction. Sam and Alex were so cool about it. The band thought the boys were real characters and I just stood back and watched them. They absolutely loved it. And me? I thought it was wonderful.
"But the best had to be when we met David Walliams. He was such a lovely, lovely guy and the children thoroughly enjoyed having their photograph taken with him.
"He was nothing like he is on the TV. He was quite quiet and softly spoken. He chatted to the boys for a while and they just loved the attention.
"You'd expect them to get all star-struck but it's quite the opposite. I think that's because they usually think they're the stars of the show."
Sarah receives lots of support from family and friends. Sam and Alex's dad is still involved in their lives and she has what she calls "night fairies" who come in twice a week to look after the children so she can get some sleep.
She also relies heavily on Rainbows Children's Hospice, where the children receive round-the-clock care and attention. For 16 nights a year, the boys stay at the Loughborough centre. It gives Sarah a well-earned rest and sometimes she goes too.
"My mum and dad are wonderful. They come to me because the boys can't get into their house because their wheelchairs are bulky. In the summer, we go to them and sit in the garden."
Sam and Alex hate to let their physical disability get in the way of life. At school, they take part in the PE, and the pair are learning how to play the ukulele.
"Sometimes school needs to make slight adjustments, like letting them use a laptop when their hands get achy and tired of writing but their school day is the same as everyone else's.
"The school's inclusion policy is amazing and the boys get to enjoy a full curriculum."
Sarah admits she does have moments of panic but she says she keeps them buried deep. She admits she worries about their futures but what mum doesn't worry about her children?
My children, Joe and Ted, are good friends of Sam and Alex. They go to the same school and have spent many a fun night bopping away together at the fund-raising disco.
Talking to me, she says: "You might worry about Joe moving to secondary school (she's right) and whether he's going to get good SATS results (she's right again), but I worry about Sam and Alex's long term future and whether they'll see adulthood."
How do you respond to that? All the concerns I have for my boys pale into insignificance when you stop and picture Sarah's situation.
She does not know when this condition will rob her boys of their life – although the prognosis is good.
"I can't change the future," she says. "But I can give them the best start. I tell them to work hard at school so they can get good jobs. It's my job to steer them down the right path so they can achieve in life.
"Sam says he wants to be a marine biologist and Alex is thinking of becoming a house husband!
"These days, people with SMA type 2 are living well into adulthood. We know of people who have got married and had babies. These stories are wonderful and make me feel really happy."
Sam and Alex may be physically disabled but they can still talk and their brains work normally.
They developed SMA because Sarah and Sam and Alex's dad are both carriers of the defective gene.
The brothers love life and despite a few moans and groans about not being able to walk, they are happy.
"They certainly keep me busy," says Sarah. "In 2013, I had 72 appointments with doctors and specialists, and then there's all the meeting about equipment and wheelchairs and vehicles.
"There's never a clear week when we don't have to be somewhere but I wouldn't swap my life for anything.
"Of course, I wish they could walk but they can't. I also wish they had come with a volume button, but that didn't happen either. Being their mum is a privilege, not a job."
Every day, I see Sam and Alex motoring round the playground but they don't notice me. While they are busy catching up with their friends, I watch them for a while. I look at their new black shoes, pristine and polished and it breaks my heart. They have never splashed in puddles, got caked in mud or ended up with holes in their soles after the first term at school.
As a mum, I have these issues but Sarah doesn't. It makes me desperately sad. Then I see their smiling faces, crop of bright blond hair and heavy book bags on the back of their wheelchairs.
Now I know more about SMA type 2, I believe the world is their oyster.
WITH THE RIGHT SUPPORT, LIFE CAN BE SO MUCH EASIERSARAH Wilson's heart broke when she heard the TV news. The children who were found dead at their south-west London home last month had SMA – spinal muscular atrophy type 2. Their mother was charged with murder.
The three youngsters were living with the exact same condition that affects her twin boys, eight-year-olds Sam and Alex.
"It knocked me right off my feet," says Sarah. "My heart went out to the family."
Sarah says the SMA community were saddened by the story. The 46-year-old is in contact with other families with SMA, and says the news hit everyone hard.
"We all share stories," says Sarah. "For me, it's another strand of my support structure. I meet with other mums who have children with SMA and we talk.
"To be honest, it's good to have people to meet with. The mums who I see are wonderful. They have become my friends.
"Finding the right kind of help is vital when you've got two disabled children to look after.
"With the right kind of support, life can be so much easier."
