Gemma & Mike, Malmaison Wedding Liverpool
Its not everyday that I post a wedding where I feel a mixture of so much sadness and happiness, this is one of the greatest celebrations of love I have had the pleasure of witnessing.
Mike sadly passed away on the 6th of February but I can honestly say meeting Mike was such a great honour I would therefore like to use this post to raise awareness.
Gemma & Mike were married last April at Malmaison in Liverpool. It was such a beautiful and very emotional day because Gem and Mike are known as “Butterfly Children” I had never come across this condition before and I was stunned at how Gem and Mike wanted to make such a difference to other people who suffer with the same condition. The condition is Epidermolysis Bullosa (EB) a potentially fatal skin blistering condition that causes constant pain due to unstoppable internal and external blistering and lifelong disability.
Gemma’s EB also causes Muscular Dystrophy, a weakness in the skeletal muscles, difficulty speaking, a tracheotomy, wounds which have to be dressed daily and an ocular surface disease. She also has a secondary blistering condition called Bullous Pemphigoid, which has to be controlled with high doses of steroids. Every day situations we take for granted in our every day life become an enormous challenge for EB sufferers.
Gem and Mike met at an EB clinic.
They came to me in the May of 2017 and I felt that it was such an honour to be part of their special day.
Mike became a Trustee for DEBRA in 2013, (the national charity that supports individuals and families affected by Epidermolysis Bullosa (EB)) he became Vice Chair of the Board in 2015 and became DEBRA UK’s Chair of Trustees in May 2018. He was the first person living with EB to become President of DEBRA International, and a true pioneer for the community.
During his time in DEBRA’s leadership, Mike was a driving force for change and a tireless and determined advocate for the EB Community. As Chairman, he created a real transformation in DEBRA’s work – he helped shape DEBRA’s priorities whilst never losing sight of the charity’s vision and direction. He inspired many people with and without EB to take a more active part in DEBRA’s work. He once said, “EB is always there to keep me focused on making decisions that will bring the most benefit to people living with EB worldwide: you never lose sight of why you’re doing the job.” Mike was a true inspiration and a real hero in the fight against EB.
If anyone would like to more information or to support this charity please have a look at DEBRA.ORG.UK
This first dance image to me, is one of the most beautiful images I have ever taken because I know that both Mike and Gem would have been in so much pain and discomfort, yet there is such a look of complete and utter love between them.
I know that Gemma will have such precious memories of her wedding day and anyone that was privileged to have been a guest that day would have taken some very special and beautiful memories away with them too.
Im so lucky to have met Mike Jeaga I have never met someone with such strength and determination in the face of such adversity. Im so sure he would have touched many lives and will be imprinted on our hearts forever.
Our love, thoughts and prayers are with Gemma and both her families.