This is Jack, Jack Adam Blunsdon, ‘chunky monkey’. Jack was born on the 11th January 2006. After a traumatic birth, with Jack requiring resuscitation and ventilation, we made it to SCBU. Nobody knew what was the matter with him, all we knew was that he was very little, very poorly, but a fighter. I had a normal pregnancy and up until the minute he arrived we didn’t know anything was wrong, and so the rollercoaster ride of our lives began.

We spent the first 6 weeks of Jacks life in intensive care, with the amazing Drs and nurses at St George’s hospital, Tooting, managing to get Jack to breathe on his own. He was still really floppy, could only feed from a tube and couldn’t swallow, but he was alive and that’s all that mattered. We were going home…..

Life became a whirlwind of hospital admissions, and medical appointments, but Jack was holding his own and becoming quite a character. At 7 months old and during a particularly long hospital stay, Jack was diagnosed with XLMTM. Our world came tumbling down. This particular hospital admission was for Jack to have another operation to help him keep his food down and also to look into his breathing. The results weren’t good and Jack was put on Bipap a non- invasive form of ventilation.

A long conversation with a specialist told us that Jack’s time was limited, he was already beginning to struggle and his health was deteriorating. We were lucky we had another amazing 5 months with Jack. Everyday he fought, and so did we. We weren’t giving up until he did.

On the 11th January 2007, Jacks first birthday, he passed away.

Our beautiful, brave little boy ran out of strength to carry on fighting, and so we said goodbye.

There is nothing that anybody can do or say to stop the pain, but there are wonderful people like, Anne, Wendy and Mel and other families, that have lived and are living your life, felt the highs and lows, the good and bad. They are there for advice, to shout and swear at, but most of all to listen and understand what you are feeling.

The Myotubular Trust was the only support network I had in those early days, and they literally helped me keep my sanity in the darkest of days.

Without your continued support and fundraising, the amazing work that they are doing into finding a cure would not be happening. Without the research our sons, grandsons, nephews, cousins would continue to be effected by this cruel disease. All of us have the power to make a difference……….