A MOTHER-OF-FOUR is fundraising to pay for an expensive new drug that could prevent her son from losing the use of his legs.
Throughout his childhood brave Harry Worrell has dealt with the devastating impact of Spinal Muscular Atrophy (SMA) on his body – a degenerative disease which has left him largely wheelchair bound – “without complaining”, according to his mother Joanne Worrell.
Speaking to The Irish Post, the 38-year-old explained that it was obvious from very early on that things were different with her second child.
“As a baby Harry was very content and happy but he was quite floppy and as he grew he never reached certain milestones, such as crawling, skipping, hopping and jumping,” she said.
Joanne, a nurse who loves in Potters Bar in Hertfordshire with her husband Dave and their four children, added: “He would also fall and wobble all the time and I remember feeling like a really bad mum. I couldn't work out what I was doing wrong.”
Harry was eventually diagnosed with SMA Type 3 at the age of three.
His older brother Jack, 15, and three-year-old twin sisters Lucy and Caitlin do not have the condition.
“When we were told that Harry had this rare, hereditary motor neurone disease, for which there was no cure and no hope, our family was devastated,” said Joanne, whose parents hail from counties Galway and Leitrim.
“I looked at my beautiful little boy and knew that I would have to watch him become weaker and weaker as all of his cousins and friends got stronger.”
Harry as a baby with his brother Jack, the two have always been closeNow aged 11, Harry has gradually lost mobility over the years and can only walk short distances.
The youngster, a devoted Arsenal fan who also enjoys watching golf and American football, currently uses a powered wheelchair and faces the prospect of losing the ability to walk entirely by the age of 14, according to his doctors.
“As other mothers watch their children do things for the first time, I have had to watch Harry do things for the last time,” says Joanne.
“Only last night I had to cut up his chicken for him,” she added.
"As his little hands get weaker, everything gets harder and the simple things we all take for granted become impossible for him.”
Harry with the family pet SnowySo when the news broke that a new drug - Spinraza - was approved in the US over the Christmas period, which had been effective for SMA patients, Joanne felt a sense of hope for her son for the first time.
“On Christmas Eve a drug became available in the US to treat SMA which was improving motor function in patients,” she explained.
“When I read about it I burst out crying. We now had hope.
“It felt like my prayers had been answered.
"It was the miracle I had dreamed of, that, with treatment, I could watch Harry get stronger and he wouldn’t ultimately lose the ability to walk, stand, sit or swallow.”
The drug, which is administered via an injection into the spine every four months, is currently unavailable in Britain, so Harry will need to fly to the US for the treatment.
His family will also have to pay for it - each injection currently costs $125,000 - alongside their travel costs and hospital fees.
This month they launched a campaign to raise £100,000 to help cover some of these costs and already supporters have donated more than £12,000 to the cause.
“It means the world to us that people care so much about our little boy and are supporting our campaign,” Joanne admits.
“Without their help Harry cannot access this treatment and we will have to continue to watch him deteriorate and suffer.”
She added: “I'll do whatever it takes to get Harry to America and give him the chance to live an independent and happy life with no more suffering.”
