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In memory of:

Mike Jaega

(20/01/1971 – 06/02/2019)

Mike became a trustee for DEBRA in 2013, 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 Chair, 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 was particularly passionate about developing EB Without Borders, DEBRA International’s initiative to educate and assist families with EB and doctors in countries without adequate healthcare or EB support groups. He inspired many people with and without EB to take a more active part in DEBRA’s work.

He 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’s association with DEBRA started at a young age, and he became deeply involved with the charity over the course of his life. His mother, Avril, was one of the founding members of the charity and some of his earliest memories were of playing on the floor of his living room whilst DEBRA meetings took place in his mother’s home.

Mike was a wonderful person with a clear focus, grit and determination to live life to the full, whilst maintaining his trademark dry sense of humour. He was a true inspiration and a real hero in the fight against EB. His passing happened far too early and our thoughts are with his wife and family. He will be sorely missed and never forgotten.

Ben Merrett – DEBRA CEO

 

Words can not explain how devastated I am  to lose my wonderful son in law, I no I’m a richer person for having the privilege of knowing him if only for a short while, even though I with my amazing daughter Gemma, Mikes father in law David and Mikes two special goddaughters Chloe and Alex’s where with him when he passed I will always remember the lovely, caring, honest person that he was with a great sense of humour which I’m sure got him into trouble over the years ,I will forever hold you in my heart and don’t worry we’ll take care of your most precious thing and the person that made your life complete your beautiful wife Gemma. Always in our hearts, Rest in peace Mike xx - Sherley Sturgess

My brother Mike was a very special man, who - despite, or because of, his own chronic pain - was immensely compassionate towards others. He was determined to use his experience positively through his work with DEBRA, to bring deeper understanding of the condition at every level, not just physically.  Our family are utterly devastated, but so proud of all he achieved. Intelligent, thoughtful and of course, his dry sense of humour is legendarily, he was a teacher for us all. I will miss him greatly as a brother, but also as a close friend. He lives on in the hearts and minds of all whose lives he touched - Trish Jaega

You were my baby Mike. I carried you in my womb next to my heart and when you were born I knew you were there for a special reason and that reason was DEBRA!  We worked as a team and we took on the World. You carried on through all your pain with an amazing sense of humour, a determination, compassion and love, determined that your life would not have been in vain and it wasn't.  I am so privileged to have been chosen as your Mum and am so very proud of you. You have left a massive hole in my heart and I know that the next time I hold you close to me you will be at peace and free from EB.  I love you to the moon and back and to eternity Mike. Mum xxxxxxxxxx - Avril Moore 

Mike,

What can your Mum say son? How can I tell you how much I love you and always have since you took your first breath, when I heard not a cry, but a scream as you entered this world in such terrible pain. I first saw you when you were a just few hours old, you were perfect apart from your little legs which were raw where you had been kicking and rubbing away at them in my womb. You had beautiful big blue eyes and fair hair, your voice was quite deep for a little baby and made it made me smile.

You spent the first two years of your life in Alder Hey Children's hospital and I visited you every day. After two years I was given two choices, I could leave you and let you go into residential care, or I could take you home. I replied “He is my son, he is going home!”

We travelled a long journey together over the years and deep down I knew that there was a reason for you, I knew you were on this earth for a purpose. The journey wasn't easy for either of us, or your siblings, it was a long hard road. I took to writing around the world learning more about EB determined that research had to start into this painful condition. Eventually in 1978, your story was told in the Woman magazine and money came in from all sorts of wonderful people throughout the world who read your story and gave willingly and these donations were used as the first monies towards the journey of DEBRA UK

Your life has been painful, frightening, scary and we, your family, have spent many hours at your bedside so many times when we nearly lost you. So many times you have had the strength and the determination to fight back and throughout all this that wonderful sense of humour, that dry wit, has kept you going and shown your wonderful spirit.

Your determination has been an inspiration to so many people throughout your life.

You had very little education but you could talk anybody under the table with politics, medicines, news and your favourite football club Liverpool, in fact any subject.

Ten years ago you were seriously ill and after five months in hospital we were told you would never walk again and a stair lift was installed in the house. When I collected you from the hospital the day you came home you took one look at the stair lift and announced “I am not going on that feckin thing, I am not in my dotage” and you never did use it. You pushed yourself to the limit and you started walking again.

When you donated skin for research you would come back in even more pain and I remember saying to you one day “Mike, you have to stop doing this, it is too much for you” and you replied “Mum, if it stops one more baby being born in pain like me, it will be worth it” That is you Mike. Brave, kind, caring, compassionate, funny, loving, a devoted brother to your sister Trisha and your brother David. There was a lot of laughter between the three of you over the years and your mother was usually the object of all this hilarity.

 In the words of your own GP, Dr Beynan, last week when I said to him “I had the privilege of being chosen to be Mike's mother” Dr Beynan replied “Not only did you have that privilege but Mike had the privilege of having you as his mother. You both worked as a team and took on the World of EB and you both succeeded with Mike climbing the final ladder to the top. I have no doubt that without you as his mother he would not have survived to the age he did!” I like to think that is true.

Whilst in hospital recently I was sat by your bedside and you were in terrible pain. A nurse walked into the room and said “Mike, how old are you?” and Mother being Mum replied “58”. Mike as quick as a flash looked at me, then at the nurse and said “Fecking hell, I am lying here seriously ill and me mother has just put ten feckin years on me life!” That sense of humour never failed.

On Monday, 4th February 2019, I went to your bedside in hospital to say my final goodbye to you. It was the hardest most heartbreaking thing I ever had to do. I was able to go behind your bed so that I could kiss your forehead and stroke your cheek and although you were heavily sedated the doctors thought you would hear me. I told you how much your Mum loved you with all her heart and I said to you that if you wanted to fight you should fight and your Mum would be there for you, but if you had had enough and you wanted to leave then you should open and spread your wings and fly, fly towards the light and go to a place of peace” One final kiss and I walked away. I walked away from my son, my baby, my wonderful brave boy, my man, I walked away with a broken heart, a heart that now has a hole in it that will remain with me until I meet you again.

 Thank you for being my son, thank you for being so brave, so compassionate, so kind, so loving, thank you for all you did for other people. For your love of your family. Thank you Mike for the laughter and that wonderful sense of humour that kept us all going over the years. Thank you for just being you Mike, thank you for being my son! I love you forever and to eternity. Mum x - Avril Moore

My Wife Maria and I wish to extend our condolences to Mike's  Family. Mike was a great man. Great men do great things, this was the measure of Mike. He was a great Man and a great Human Being. His passing is a big loss to the World wide EB community. May He Rest in Peace. ❤ - Val & Maria Fynes & Family. Founder Member of Debra Ireland and Member of the Board of Directors of Debra Ireland

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