Hon Wai Wong was born with Junctional EB at Birmingham’s Sorento Maternity Hospital.
From a new new-born baby until he was around ten years old, Hon spent a lot of time at Birmingham Children’s hospital, as it was thought that he suffered a lethal form of Junctional EB. It was only when Hon was sent to Great Ormond Street for a skin biopsy, that it was discovered that he actually had a different non-fatal form of Junctional EB.
Around this time, Dr. Celia Moss set up a Children’s EB clinic at Birmingham Children’s Hospital and Hon was one of her first EB patients. The EB clinic covered different aspects of EB, such as eye, dental, diet and skin. This meant that Hon could spend more time at home with regular visits to the clinic. Hon was also one of the first patients at the Adult EB clinic that was set up at Solihull Hospital under the care of Dr. Adrian Heagerty.
During primary school years, Hon mainly attended a special school, which was inappropriate in that it catered mainly for mentally disabled children. However, Hon was subsequently placed into a mainstream primary school once a week, to integrate with other school children of his age and ability.
The early years of secondary school was a time when Hon felt unhappy and lacked self confidence, as he had severe facial blistering and scaring. Hon underwent skin graft surgery to correct this, which was very successful. Although regular blistering of the eyes and feet caused Hon to take a lot of time off school, he excelled at school obtaining 7 GCSE’s and went on to get an Advanced GNVQ in IT at College.
Seeking an independent life, Hon went on to Staffordshire University to study Computing with Electronics. However, after a year, with a lack of support from the Social Services (Hon was unable to get a carer to support him with health and domestic support), EB and other related health problems meant that Hon found himself in hospital again for the Christmas season. Later on Hon was able to transfer to a local University, where he completed a BSc degree in Business Information Technology.
Hon has been busy volunteer for DebRA with their computer support and also helps support the West Midlands Fundraising Team. Hon also helps other people living with EB who need IT support or advice.
Hon says: “There was a time when I was so sick and tired of living in pain, all I felt like doing was waiting to die, but now I just want to live and enjoy life whilst I’m alive. Thanks to DebRA for all their kind support they provided for me and others with EB"
Hon recently completed a 12,000 feet skydive in aid of DebRA.
