![\"Jo](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/0_medics-thought-1406649.jpg\")
Jo with son Henry(Image: Jodee Phillips\/SWNS)<\/p>\nJo Phillips said her concerns were intially dismissed, but she kept researchingJo with son Henry(Image: Jodee Phillips\/SWNS)<\/p>\n
A mum\u2019s gut instinct led to her son\u2019s diagnosis of a life-limiting condition after health professionals told her “boys are just lazy”. Jo Phillips, 41, became worried when her son Henry, now nine, wasn\u2019t hitting his milestones – such as rolling over or crawling.<\/p>\n
But when she raised concerns with health professionals, at nine months old, she claimed she was dismissed and told “boys are just lazy” and she “wasn’t doing enough to encourage his development”. Trusting her gut, Jo started researching herself and noticed Henry’s liver enzyme levels were high at birth and at three months old.<\/p>\n
The family was placed under a different medical team and Jo’s concerns were taken seriously. Genetic testing confirmed he had Duchenne muscular dystrophy (DMD) at 14 months old.<\/p>\n
The rare muscle-wasting condition causes progressive muscle weakness, which has no cure, and Henry lost his ability to walk last year and now depends on a wheelchair.<\/p>\n
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.<\/p>\n
“It wasn\u2019t said to be unkind. They were just trying to reassure me. But I knew something wasn\u2019t right and I had to keep pushing.<\/p>\n
\u201cHaving my concerns dismissed left me feeling completely unheard. It was as if my worries didn\u2019t matter and I was being brushed off as that overly anxious mother. I felt judged and hopeless.\u201d<\/p>\n
![\"Jo](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/0_medics-thought-1406637.jpg\")
Jo with Henry when he was a toddler(Image: Jodee Phillips\/SWNS)<\/p>\n
Jo also spotted Henry wasn’t pushing up on his arms and had lost significant weight by the time he was nine months old. When she was told there was nothing to worry about, Jo started doing her own research.<\/p>\n
She said: \u201cI just had this gut feeling. I couldn\u2019t stop researching and I was terrified by what I was finding. I think deep down, I already knew.\u201d<\/p>\n
She combed through Henry’s medical records and noticed he had high enzyme levels at birth and at three months old.<\/p>\n
Jo said: \u201cNo one had followed up on those results. It left me questioning why these signs weren\u2019t investigated by the professionals who were supposed to be monitoring his health.\u201d<\/p>\n
In 2016, Jo\u2019s husband Rob, 45, was posted to a new army regiment, in Colchester and the family were placed under a different medical team. This time, Jo\u2019s concerns were finally taken seriously.<\/p>\n
She said: \u201cThe GP was incredible. She listened to me instead of writing me off as \u2018that mother\u2019. She ran blood tests straight away.\u201d<\/p>\n
A blood test revealed Henry had significantly raised creatine kinase (CK) levels, and genetic testing confirmed he had Duchenne muscular dystrophy (DMD). He was formally diagnosed in April 2017, aged 14 months.<\/p>\n
Further 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.<\/p>\n
Jo said: \u201cWe were told there\u2019s no treatment, no cure. Just physio and OT to manage things. I held him in my arms and cried. It was devastating.\u201d<\/p>\n
![\"Rob](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/0_medics-thought-1406643.jpg\")
Rob with Henry when he was a toddler(Image: Jodee Phillips\/SWNS)<\/p>\n
Despite everything, Henry is full of life. Jo describes him as a \u201cmischievous, easy-going\u201d boy who\u2019s happiest outdoors, particularly at his forest school.<\/p>\n
\u201cHe\u2019s in his element out there,\u201d she said. \u201cHe wants to pick up sticks, explore the woods, throw things into the lake. He\u2019s never stopped wanting to do the things little boys should do.\u201d<\/p>\n
Henry received his first wheelchair at age three. His mobility has since slowly declined, and just before last Christmas, he lost the ability to walk altogether.<\/p>\n
Jo said: \u201cIt was sudden. One day he was managing short distances, from the living room to the car and then he just couldn\u2019t anymore.\u201d<\/p>\n
Henry now relies on a manual wheelchair full time, but it limits his independence, especially outdoors. The family is currently fundraising for an all-terrain powered chair so he can regain some of the freedom he\u2019s lost.<\/p>\n
Jo said: \u201cThe world\u2019s starting to close in on him and that\u2019s heartbreaking. He just wants to be a kid in the woods.\u201d<\/p>\n
Jo, who previously worked as a soft tissue therapist, has now had to give up her career due to Henry\u2019s complex care needs. He stopped attending school in September 2023 due to anxiety and noise sensitivities, and has been unable to return since.<\/p>\n
She said: \u201cI\u2019m his mum, carer, teacher and friend right now. Because of the nature of my job, I couldn\u2019t treat clients while homeschooling and looking after Henry full-time.\u201d<\/p>\n
![\"Henry](\"https:\/\/www.europesays.com\/us\/wp-content\/uploads\/2025\/07\/0_medics-thought-1406634.jpg\")
Henry Phillips(Image: Jodee Phillips\/SWNS)<\/p>\n
The family lives in MOD housing in Brampton due to Rob\u2019s occupation in the army. An important person in Henry\u2019s journey has been his big sister, Georgie Phillips, now 10, who Jo says is \u201chis best friend\u201d.<\/p>\n
She said: \u201cShe plays with him in a way he can join in, she makes him laugh, she never complains. She\u2019s central to his world.\u201d<\/p>\n
Jo says the diagnosis has reshaped every part of their lives, but she\u2019s determined to give Henry as much joy as possible.<\/p>\n
She said: \u201cHe\u2019s so happy. He really is. And as long as he\u2019s laughing, I know we\u2019re doing something right.\u201d<\/p>\n
Now she wants to raise awareness of DMD and encourage other parents not to give up if they feel dismissed.<\/p>\n
She said: \u201cYou know your child better than anyone. If something doesn\u2019t feel right, keep going back. Ask again. Push harder. Because someone will listen and it can make all the difference.\u201d<\/p>\n