A mother advocating for greater awareness of hidden disabilities has shared the story of her nine-year-old son, Archie, who battles with a life-limiting illness called pulmonary hypertension (PH). This condition impacts the pressure in the vessels between the heart and lungs, leading to severe breathlessness, limited mobility, and constant fatigue for Archie. Despite his struggles, Archie appears healthy from the outside, which often leads to misunderstandings and misconceptions about his condition.
Sarah Williams, Archie’s mother, residing in Greenfield near Holywell, Flintshire, is using their story to shed light on PH and the challenges faced by individuals living with invisible illnesses. With an upcoming awareness day, PH DAY UK on November 1, organised by the Pulmonary Hypertension Association (PHA UK), Sarah hopes to educate others about the realities of living with PH.
Sarah highlighted the difficulties her family faces, including facing scrutiny over using disabled parking spaces and the limitations Archie experiences in participating in regular childhood activities. Archie’s condition not only affects his physical abilities but also impacts his interactions with siblings and his overall quality of life.
Diagnosed with PH at the age of five, Archie receives treatment at Great Ormond Street Children’s Hospital in London. While he manages his symptoms with medication, there is no cure, and the disease is expected to shorten his life. Despite these challenges, Sarah emphasises Archie’s resilience and the need for increased understanding and awareness of PH and other hidden disabilities.
Pulmonary hypertension affects a relatively small number of people in the UK, with many cases developing unexpectedly. Dr Iain Armstrong, chairman of PHA UK, stresses the importance of recognising the struggles faced by individuals living with hidden illnesses and expresses gratitude to Sarah for sharing her family’s journey.
Sarah’s advocacy aims to bring attention to the daily battles faced by individuals like Archie and to encourage empathy and support from the public. As the family navigates the complexities of living with a rare disease, their story serves as a reminder of the strength and courage exhibited by those with invisible illnesses.
For more information on pulmonary hypertension and to learn how to support those affected by PH, visit www.phauk.org.