Mum’s heartbreak over son’s future living with muscular dystrophy
SHE’S DOING HER BEST FOR LENNY
A MUM from Hull was heartbroken after learning her three-year-old has a rare genetic condition that has a life expectancy of 20 years, but she is determined to prepare him for his future
Leonard, known as Lenny, was diagnosed with Duchenne muscular dystrophy (DMD) at the end of last month. Since then his mother, Kirsty Griffin, 31, said their world has turned completely upside down.
She said: “The kind of future I thought he would have, it’s going to look different now. To look at him, you wouldn’t think there was anything wrong, so I had no idea.
“It has been heartbreaking, he has had to go through a lot in the past three to four weeks. He understands that his muscles are poorly. He asked me ‘mummy why are these doctors hurting me?’
“And I have to tell him that they are trying to make it better, but sometimes it means having to take an injection and that might not feel nice. He has been really struggling with being poked and prodded by lots of different people.”
Lenny’s condition would mean that over time, his muscles would become weaker. By the time he is eight, he would require a wheelchair to be able to move around.
In the meantime, Ms Griffin wants to do all she can to help him prepare for his future, and she has been very grateful for the help she has received from local charity Life For A Kid.
The charity raised £1,000 for a specialist pram and bed for Lenny’s needs and presented him with a cheque during a charity rugby match on Saturday.
Ms Griffin said: “All I can think about is my little boy. He’s going to have to endure so much. Is he going to be able to do certain things, like walking to school?
“It is just devastating so it’s been helpful when we had support charities or his nursery, to know that we’re not alone.”
Ms Griffin has also set up a Just Giving page to help fundraise for additional equipment that Lenny will need. She said: “The wheelchair he will need is £13,000 and we are doing our own savings in that time, but it would also be nice to give him other equipment that he would need for getting in the bath or getting up the stairs. “According to occupational therapy, he is not there yet, but I can see him struggling.
“I want to help keep him as independent as possible. So while we might not use all of it immediately, it’s kind of making sure that if he suddenly goes downhill quickly, then we’ve got a contingency to support him.
“We want to treat him like a three-year-old but also give him as much as we can in whatever time we have with him.”
Eventually, the family wants to raise funds for Duchenne UK to support clinical trials and research for DMD to hopefully find a cure, and help Lenny and other boys like him.
Donations can be made on Lenny’s Justgiving page at www.justgiving. com/crowdfunding/lifeandhopefor lenny
All I can think about is my little boy. He’s going to have to endure so much
Kirsty Griffin