'I was told boys are lazy, but I knew something was wrong with my baby'

A mother's instincts saved her son's life after medics dismissed her worries by saying "boys are just lazy". Jo Phillips, 41, grew concerned when her lad Henry, now nine, wasn't reaching key milestones - like rolling over or crawling.

However, when she voiced her fears to healthcare experts at nine months old, she claims she was brushed aside and told "boys are just lazy" and she "wasn't doing enough to encourage his development". Following her intuition, Jo began investigating herself and spotted that Henry's liver enzyme levels were elevated at birth and at three months old.

The family was transferred to a different medical team and Jo's worries were treated seriously. Genetic tests revealed he had Duchenne muscular dystrophy (DMD) at 14 months old.

READ MORE: Cardiologist shares 5 symptoms you should never ignore and when to call 999

READ MORE: Experts explain what it means if you wake up between 3am and 5am and when to worry

The uncommon muscle-wasting illness triggers gradual muscle weakness, which has no treatment, and Henry lost his capacity to walk last year and now relies on a wheelchair.

Jo, a full-time carer for Henry, from Brampton, Huntingdon, Cambridgeshire, said: "One health visitor told me 'boys are just lazy'. Another said I wasn't doing enough to encourage his development.

"It wasn't said to be unkind. They were just trying to reassure me. But I knew something wasn't right and I had to keep pushing.

"Having my concerns dismissed left me feeling completely unheard. It was as if my worries didn't matter and I was being brushed off as that overly anxious mother. I felt judged and hopeless."

Jo also noticed Henry wasn't pushing up on his arms and had shed considerable weight by the time he reached nine months old. When she was reassured there was nothing to worry about, Jo began conducting her own research.

She said: "I just had this gut feeling. I couldn't stop researching and I was terrified by what I was finding. I think deep down, I already knew."

She trawled through Henry's medical records and discovered he had elevated enzyme levels at birth and at three months old.

Jo said: "No one had followed up on those results. It left me questioning why these signs weren't investigated by the professionals who were supposed to be monitoring his health."

In 2016, Jo's husband Rob, 45, was stationed with a new army regiment in Colchester and the family were assigned to a different medical team. This time, Jo's worries were finally taken seriously.

She said: "The GP was incredible. She listened to me instead of writing me off as 'that mother'. She ran blood tests straight away."

A blood test revealed Henry had dramatically elevated creatine kinase (CK) levels, and genetic testing confirmed he had Duchenne muscular dystrophy (DMD). He was formally diagnosed in April 2017, aged 14 months.

Additional genetic analysis showed Henry has an in-frame deletion from exons 3 to 44 in the dystrophin gene. He was also diagnosed with severe autism at 24 months and remains non-verbal at age nine.

Jo said: "We were told there's no treatment, no cure. Just physio and OT to manage things. I held him in my arms and cried. It was devastating."

Despite everything, Henry is full of life. Jo described him as a "mischievous, easy-going" lad who's happiest outdoors, particularly at his forest school.

"He's in his element out there," she said. "He wants to pick up sticks, explore the woods, throw things into the lake. He's never stopped wanting to do the things little boys should do."

Henry received his first wheelchair at age three. His mobility has since gradually deteriorated, and just before last Christmas, he lost the ability to walk altogether.

Jo said: "It was sudden. One day he was managing short distances, from the living room to the car and then he just couldn't anymore."

Henry now depends on a manual wheelchair full time, but it restricts his independence, especially outdoors. The family is currently fundraising for an all-terrain powered chair so he can regain some of the freedom he's lost.

Jo said: "The world's starting to close in on him and that's heartbreaking. He just wants to be a kid in the woods."

Jo, who previously worked as a soft tissue therapist, has now had to abandon her career due to Henry's complex care needs. He stopped attending school in September 2023 due to anxiety and noise sensitivities, and has been unable to return since.

She said: "I'm his mum, carer, teacher and friend right now. Because of the nature of my job, I couldn't treat clients while homeschooling and looking after Henry full-time."

The family resides in MOD housing in Brampton due to Rob's role in the army. A significant figure in Henry's journey has been his elder sister, Georgie Phillips, who is 10 years old now, whom Jo describes as "his best friend".

She said: "She plays with him in a way he can join in, she makes him laugh, she never complains. She's central to his world."

Jo admits that the diagnosis has reshaped every aspect of their lives, but she's resolved to provide Henry with as much happiness as possible.

She said: "He's so happy. He really is. And as long as he's laughing, I know we're doing something right."

Now, she aims to raise awareness about DMD and inspire other parents not to surrender if they feel overlooked.

She advised: "You know your child better than anyone. If something doesn't feel right, keep going back. Ask again. Push harder. Because someone will listen and it can make all the difference."

You can support Henry's fundraising campaign for an all-terrain wheelchair via GoFundMe.