EVERYONE is wild about Harry Bulman.
The brave Youghal boy, who will be seven in September, suffers from Spinal Muscular Atrophy (SMA), and is currently receiving a breakthrough treatment after a long campaign by his family.
Harry has now been awarded a medal to celebrate his courage through all the treatments and difficulties he has gone through since he was diagnosed when he was 18 months old.
“Harry is an inspiring, courageous young man,” says Miceál O’Hurley, owner of Fantastic Flavours ice-cream parlour in Youghal, who decided to give Harry the award.
Harry, who is doing well on a new drug, Spinraza, is a fan of Fantastic Flavours and is a regular customer there.
“He is a great little guy — Harry deserves this medal.” says Miceál.
He is a life member of the Veterans of Foreign Wars (VFW), and his wife, Oksana Shadrina, is a member of the Veterans of Foreign Wars Auxilary. Through this organisation, the pair presented the Courage Inspiration Determination Medal (CID) to Harry.
“The award is presented on behalf of our comrades in VFW,” explains Miceál.
It is a very special honour.
“The award is presented to a very select few young boys and girls facing a serious illness or condition whose stories inspire other children and American Veterans by their shared courage in the face of adversity,” adds Miceál.
For Harry’s mum, Rebecca, it has been a long and difficult journey..
“I was lost for words when Harry was approved by the HSE to receive the new wonder drug, Spinraza” she says.
She was among the parents of 25 other children with the rare muscle wasting condition who campaigned outside the Dáil in March, 2018, for access to Spinraza, a life-changing therapy for SMA.
“I was campaigning for almost two years,” says Rebecca, who says the fight isn’t over yet.
“We need the drug for everyone,” adds Rebecca, who is delighted with Harry’s progress since he got access to Spinraza.
“It gives Harry a chance to do all the things he loves to do. He won’t lose the ability to write in school like he would if he didn’t have Spinraza.”
He got a new lease of life when he was one of 25 children approved for the drug last June.
“He is improving and he is not as sick as much since taking the drug,” says Rebecca. “He was on loads of machines to help the muscles in his chest if he got sick. Now, his scoliosis, which is part of his condition, isn’t as obvious.”
SMA is a genetic disease where one of two muscle building genes is missing. A child with the condition is unable to sit or speak.
There are four types of the illness. Children with type one rarely live beyond two years of age. Those with type two, like Harry, have a life expectancy of early 20s.
Now that prognosis has changed for Harry, who is in First class at Bunscoil Mhuire, Youghal.
“Most of all, the drug will lengthen his life expectancy,” says Rebecca. “And that’s all I could ever wish for.”
Spinraza is a treatment that can help Harry’s condition by putting extra proteins into the one remaining muscle building gene, helping maintain the muscle that is there, and in some cases, actually rebuild the muscle.
At present, young Harry is getting stronger. His appetite for ice-cream and for life increases by the day. “He is eating and drinking well to boost his calorie intake,” says Rebecca. “Hi energy levels are increasing. He whizzes around in his power-driven wheel-chair.”
Harry is a happy boy.
“He loves school!” says Rebecca, laughing.
“He is a fan of football and GAA. He will throw himself into anything.”
The youngster has good mates too.
“Dr O’Rourke, Harry’s neurologist, and Harry are best mates,” says Rebecca.
The family have great help on hand too.
“My wonderful fiancé adores Harry,” says Rebecca. “Harry’s dad and his girlfriend love Harry too and they are always there for him.”
Harry is a popular young man.
“We have huge support from generous people in the locality and we are currently fund-raising €15,000 for a car suitable for long journeys. Harry attends Temple Street every few months.”
Is Harry chuffed, getting this prestigious the CID award reserved for very brave children who inspire others?
“Harry loves the limelight!” says Rebecca. “And he loves adventures.”
He loves going to the gym.
“Harry works out with Colin and his team at Elite Fitness in the Marina,” say Rebecca. “It has made the world of difference to Harry. Now he can sit up in bed and I can’t imagine how he would be if his arms became too weak to train.
“He dances, sings and chats all the way home. He has his moments too though!”
Harry, one of a chosen few, will cherish his award recognising his courage and resilience.
“We couldn’t believe he made the short-list for the CID award. It is a huge honour.”
“He will live the best life possible,” says Rebecca.
“Even though he can’t walk, there is no need for him to walk. He is happy the way he is.”
Rebecca is very proud of her little trouper. Harry is a real-life hero recognised for his bravery.
“He is my little hero,” says Rebecca.