I fell in love with a Butterfly…
I met Hon back in 2009. He was busy working for Whizz-Kids, teaching children how to use their wheelchairs. We immediately hit it off and decided to go on a date to Monkey World – Hon always jokes I took him to see monkey butt! We fell in love. We got married a year later and the rest is history…
We travelled and went to new places as often as we could. Hon has such a zest for life, nothing stops him, certainly not EB. Hon is highly intelligent and the bravest person I know. Before we met, Hon went to University to get a Degree. Hon is highly intelligent and the bravest person I know. Hon also did a Skydive in 2005, he really is fearless. Life with Hon is never boring, especially with EB, it certainly makes life unpredictable!
Hon has had the Junctional Non-Herlitz form of EB since birth. Junctional is one of the rarer forms of EB. There is no cure. Hon has used a wheelchair for decades due to the chronic blistering and open wounds on his feet, they are raw. Hon has open wounds head to toe.
We spend hours and hours doing baths/ dressings/ creams/ popping blisters daily. EB is 24/7, 365 days of the year, it is relentless. Hon is at very high risk of infection and sepsis due to the amount of open wounds he has, and the immunosuppressants he has to take. Hons attitude is always you have to control EB, otherwise it will control you…
Hon’s kidneys deteriorated in 2010 and we hit dialysis with a bang. I quickly learnt how to do haemodialysis, so we could do it at home. Two years on we had a miracle donor and the world’s first Kidney Transplant with EB in 2012. 10 years on, Hon’s still going strong.
Due to the transplant Hon has to take several immunosuppressants which has clipped our wings during Covid times. As Hon is clinically extremely vulnerable we shield as protection. The immunosuppressants have caused two episodes of Squamous Cell Carcinoma this year, leaving Hon with extremely large/ deep surgical wounds to tricky areas, along with the usual EB wounds.
For me the hardest thing to watch is the Corneal Abrasions. They are spontaneous, and happen when you least expect it. Hon describes it as though someone has thrown acid in his eyes; the pain must be excruciating. All we can do is keep his eyes closed, in a darkened room, with eye drops. Sometimes it’s days, sometimes weeks, the worst was 2 months. To be rendered temporarily blind and not able to open his eyes is heart-breaking. I always feel so helpless, as there is nothing I can do except be there and love him.
We are very lucky, we have each other and we battle EB together, we are a team. Hon is truly amazing, he is my soul mate, my forever love and my Butterfly x