'My son has rare life-limiting hypertension - but people don't get it because they can't see it'

A mother is calling for a greater recognition of after her nine-year-old suffered several challenges relating to his .

Archie, nine, has pulmonary hypertension (PH), which leaves him suffering with breathlessness, issues with mobility, and debilitating fatigue and exhaustion. PH - which is high pressure in the heart and lung blood vessels - is considered a hidden and to look at Archie, you would think he was a healthy nine-year-old lad.

Sarah Williams, from Greenfield in Flintshire, is taking part in an awareness day in the hopes of encouraging understanding about the condition, as well as the difficulties of living with an invisible illness. PH DAY UK takes place on Friday, November 1, and is organised by the Pulmonary Hypertension Association (PHA UK), who support individuals affected by PH. Sarah said: "People don't understand why Archie can't do what other kids do, because he looks fine."

She added: "If he was in a wheelchair, it would be obvious, or if he was wearing an oxygen mask then people would ask questions. But all they see is a pale little boy who doesn't go out much. Simply walking to is a huge struggle for him, but no-one has ever heard of PH so they don't get how serious it is. It's taken Archie's childhood away from him, but because it's an invisible illness, people just don't get it."

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Sarah has a Blue Badge to park in disabled bays with her son Archie, but has been challenged by some people questioning her use of the spaces, reports . Archie has a 16-year-old brother and a three-year-old sister, but is unable to play with them because of his illness.

"Archie's PH has changed everything for our family, Sarah said. "We can't even all go to the park together because it's too much for him." Explaining the impact of his condition, she said: "He falls asleep at school, and he can't join in at playtime – he just can't do things that other children do, and what he should be doing. He's alive, but it doesn't always feel like he is living."

Diagnosed with pulmonary hypertension (PH) at five, Archie is treated at Great Ormond Street Children's Hospital in London, the sole UK hospital specialising in care for children with this condition. He is on two types of medication to manage his symptoms; however, there is no cure, and the condition is expected to shorten his life.

Sarah said: "The progressive side of the illness is the hardest thing to take. But despite everything, Archie just gets on with things. He's so inspiring, and such a character. I just wish people knew more about PH and understood that not all disabilities are visible."

PH affects only 8,000 people in the UK. While it can be associated with other diseases, many cases of PH develop "out of nowhere". Dr Iain Armstrong, chair of the Pulmonary Hypertension Association UK said: "It is devastating for parents to find out their child has PH. Very few people have heard of it and those with the condition often appear well from the outside. It's important for the general public to understand the challenges of living with a hidden illness, and we are grateful to Sarah for sharing her family's story."