Lincoln mother’s mission to raise awareness of her child’s rare terminal condition

The mother of a five-year-old boy from a village near Lincoln is determined to raise awareness of his rare terminal illness to help others going through the same as her family.

Lyndsey Kaye’s son Riley was diagnosed with Duchenne muscular dystrophy (DMD) when he was three-years-old. At the time he was under observation for autism, as he wasn’t yet speaking and a blood test found high levels of CK (creatine kinase).

It was believed he had Duchenne muscular dystrophy and he was referred to a specialist at Queen’s Medical Centre, who told the family Riley had the condition. It means Riley’s body does not produce a protein called dystrophin, which is needed for muscle function.

Riley lives with his parents in Nocton, as well as his 14-year-old brother Logan and nine-year-old sister Faith. He is unable to speak, but communicates through noises, gestures and signs. He can’t walk big distances and needs full-time care.

There is no cure for the disease, but he was recently put on steroids called Prednisolone to help prolong his life expectancy.

For a boy, 1 in 3,600 are born with the rare life-limiting degenerative muscle disease. People with it lose all muscle function gradually and it later affects the heart, with the average life expectancy of 20-years-old and many permanently in a wheelchair by age 10.

DMD affects around 2,500 people in the UK with the vast majority being male. In around two thirds of cases it is genetic, but Lyndsey said Riley’s case was a spontaneous mutation in his own genes.

Lyndsey wants to raise awareness of the condition and told The Lincolnite her message to other families receiving a diagnosis.

She said: “For me, as a parent, when anything is wrong with your child you want to be able to fix it, and this is something that can’t be fixed, so it is hard to come to terms with the inevitable, but we are helping him to be as happy as possible.

“It is okay to feel like your world has ended, as it is a shattering diagnosis, but that feeling will pass. The pain is always there, but you learn to live more in the now.

“I see Riley for him and focus on the now rather than worrying about the future without him.

“He is one of the happiest, cheekiest people you could ever meet. He can’t speak, but he has a cracking personality and understands most of what is being said to him.

“Riley is the same happy little boy he was before the diagnosis and I intend to keep life that way for him.”

Riley’s father Matthew said: “I always live in the now. Riley is the same happy little boy he was before the diagnosis and I intend to keep life that way for him.”

The first coronavirus lockdown was particularly hard for the family last year, as Riley was shielding. When he was later able to return to Nocton Community Primary School it made him feel really happy.

Lyndsey was full of praise for the school, who she said are all learning Makaton to help Riley. Makaton is designed to be used to support spoken language, for people with learning or communication difficulties.

She said the school’s deputy headteacher Mrs Douglas arranged a special assembly a few weeks ago to raise awareness of Duchenne muscular dystrophy, which she was “very touched” by. Lyndsey recorded a video to help explain the condition which was played during the assembly.

She added that the school has been fantastic and also helped her daughter Faith, who has found it hard to see her brother declining. She also described the community of Nocton as “her rock”.

“It makes me completely believe in the acceptance the adults and children have,” Lyndsey added. “As an adult we can learn so much from kids as they try and focus on positives.”

A fundraiser at the assembly, including a raffle, raised £600. This will go towards a fundraiser set up by Lyndsey’s best friend Debs Holland.

Debs is walking 100km continuously for the Peak District Challenge on July 3 this year for Action Duchenne and has already raised over £1,300 – make a donation here.

Debs said: “My best friend in our village has a young boy who I have loved since birth. The siblings and the whole family have faced every obstacle imaginable and not just those related to Duchenne.

“Now more than ever I cannot help as much as I used to and need to help in some small way. Feeling so powerless I need to help them, even if indirectly, to raise awareness of Duchenne.”