Family Stories - Will



 

Our twins were born prematurely at 32 weeks. Whilst Isla was born little she was healthy. Will was a different story altogether, one that would be played over the months and years that followed. He was fortunate to be diagnosed with X-linked Myotubular Myopathy early on so a plan of care could be formulated. He was looked after by so many wonderful individuals in the NHS, our local children's hospice and respite care team. Their efforts and continuous expert care enabled our little fighter to thrive to the best of his ability.

We were able to bear witness to so many incredible feats, that we all take for granted. We were told early on that it would be unlikely he would be able to smile or recreate facial expressions. Well he had a smile that could melt a room. He time after time silenced his critics, he survived his first year, against all odds. He could sit up for short periods of time, and was eventually able to navigate an iPad on his own.

The journey with Will was not a smooth ride by any stretch of the imagination, but this little guy of ours taught us that strength is not about the size of your muscles, but what we are made of. We soon realised how apt his name was as he was made of so much will, it literally defined him.

Will sadly lost his battle with Myotubular Myopathy a little before his third Birthday, he was such a special gift; one we only had on loan for a short time. Our lives are so much richer for being part of his story. He helped us learn the most important lesson in life. Life is about love and the rest is just stuff.