www.debra.org.uk  - The only charity in the UK working for people affected by EB.

James Terrence Lynch (Jim Jim)  28 Apr 2007 - 11 Sep 2007 Glasgow  Jim Jim was born with a genetic conditon called  Epidermolysis Bullosa (EB), he had the most severe form of EB and its fatal in infancy.

Soon after Jim Jim's birth, we were given the dreadful news that our son would be unlikely to see his first birthday.  It was also that day we decided to put all our emotions into a box, close it and get on with it but it was very hard.  After 3 weeks in Yorkhill hosptial, we were able to take him home and spend some quality time with him as a family, it was short but very special.

Mummy wrote a letter to Jim Jim at Robin House, with a lot of love. The original hand written letter was placed in his coffin.

Letter written by Mummy and the story of our brave wee boy Jim Jim. 

Dear Jim Jim,

Mummy, Daddy & Kelly, love you very much. The day I discovered I was pregnant with you, I felt so happy, I tried so hard, I ate well, I wanted to give you a healthy start. Little did I know that you were never healthy from day one, you know what Jim jim, Mummy and Daddy's world stopped when we were told that you've got a condition called EB, we could not think, we had so many questions but none of them could be answered.

The day they took a skin biopsy, we were there, we could hear you cry, it broke our hearts. We kept thinking about your future, we really wanted the best for you but then with EB, we could not see any future, the future looked very grim, Mummy cried so much but then when I fed you, you kept looking at me and you were such a good baby, you only cried when you were hungry, you are mummy's little boy.

When they told mummy that you've got the most severe form of EB,  Herlitz Junctional Form, Daddy and I felt a little relief, we love you so much, we would never want you to live with EB for a long time then still die eventually, we both thought, we love you Jim Jim, we want the best for you that's why we felt relief, we really never want to watch you suffer and watch you go.

Mummy could not enjoy you in the early days, I found it very hard, I could not come to terms with your conditon, but then strangely, I slowly coming to terms as the time went by, I tried not to think about your EB so much, I started to enjoy you, I found ways to enjoy you, we played Mr. Octopus together, when you managed to grab Mr. Octopus, Mummy was so proud of you, I watched Babytv with you, I sang you songs, I sat in the garden with you, I pushed you in your pram, it is true that I could not do much with you cos I could not really touch you, but I enjoyed being with you Jim Jim, like I always said, you are the best boy in the world.

Mummy really wanted to play with you, like, lift you up under your arms, bath you, wash your hair, but I could not do any of that, not that I didn't want to , I just didn't want to hurt you.

We never liked giving you your drugs, your morphine, changing your dressings and popping your blisters with a needle, mummy found it very hard, even after more than 4 months, changing your thumbs, mummy cried each time in my heart.

As time went by, I could see your courage Jim Jim, but then I did not want this to go on any longer for you Jim Jim, your ears started breaking, bleeding and so as your thumbs, there was no skin left on your thumbs, mummy could do nothing but watch, still, I thought you were amazing, you gave me the courage to live with your EB.

The final week was hard, it must be harder for you cos you were the one who lived with EB not Mummy, Mummy spent Monday night with you at Robin House, I watched you sleep, knowing it's probably the last time I see you sleep, you slept for a long time, didn't cry, you looked so lovely, mummy cried though, I will never see you again, touch you again, feel you again, but we listened to this tune together, our tune, you and me, the nurse saw mummy crying and she asked if mummy wants to lay next to you and I did, I was watching you in tears, when you started going cold, I placed my hands on your face, I held your hands, Mummy wanted to protect you and wanted to keep you warm.

At the end, Jim Jim, Mummy, Daddy, Grandmum and Auntie were all there for you like we always were, Mummy & Daddy placed our hands on your chest, we could feel your heart beat but the moment it stopped , our world stopped too, part of us is missing, we told you to go, Mummy said to you, "it's okay Jim Jim, you look after yourself now Jim Jim, Mummy cannot look after you anymore, be a good boy for Mummy, I know you will be, we love you".

Mummy & Daddy finally got the chance to hold you, without your spenco mattress, I kissed you Jim Jim, you live in our hearts and our love for you will never die.

Love you our boy Jim Jim, we miss you.

Mummy, Daddy & Big sis Kel xxxx

In loving memory of James Terrence Lynch ( Jim Jim ), we are going to do the Great Scottish Walk on 25 May 2008 in Glasgow,  we want to do our bits to help raise awareness of Jim Jim's condition and raise funds for this wonderful charity - DebRA.

Everyday we remember our lovely boy Jim Jim and we also remember the support  DebRA  has given us while we needed it the most.  The day we said goodbye to Jim Jim, there was a rainbow in the sky, it was for him, for his beautiful wee soul. Jim Jim was a son we have always been proud of and it has been a privilege to be his parents.

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