Hayden has just received his Star Wars quilt, and it truly is wonderful!
Thank you so much to everyone involved
To say he is thrilled would be an understatement.
He keeps going up to it, admiring the different squares, and saying 'I'm very happy'
And Baby Yoda on the reverse was a lovely touch!
I know that a lot of time, patience, (and possibly plasters!), has gone into stitching the squares, and then doing the quilting, and we are truly grateful.
With love and best wishes from
Hayden, Dawn, and the whole family xx
Hayden was born on a lovely Spring day in May 2008. It was very dramatic as I went into early labour whilst on family break at Center Parcs to celebrate my birthday. We then had to rush to the hospital and arrived with about 30 minutes to spare! Other than that his early months were normal and gave us no cause for concern.
However, as he approached his first birthday, we started to get concerned because he was missing his major milestones by a long way. He was almost one but could barely crawl let alone walk. Fast forward to the approach of his fourth birthday after two years of being told that he had 'lax ligaments' and that 'special boots might help', it was clear that there was still something wrong.
He'd been walking since just before his second birthday, but his walk had a strange gait to it, and he struggled to stand up from sitting on the floor. So we had him checked again. This time they did a blood test and discovered an extremely high level of an enzyme called Creatine Kinase (or CK). This is a strong indication of Duchenne Muscular Dystrophy and Hayden's diagnosis was fully confirmed by a genetic test.
That was ten years ago. Hayden has spent his life since then going to and from various hospitals, mostly Great Ormond St, taking part in clinical trials, being tested, undergoing rigorous physiotherapy, as well as trying to have a normal childhood with school, going to Scouts, (which he loves),karate (purple belt) and being seriously into Lego and Star Wars.
He is a fun loving, happy go lucky chap who refuses to let his condition rule his life. Unusually he is still walking and only occasionally uses his wheelchair. He puts up with the daily grind of medication and exercises with a stoic acceptance that would put most adults to shame.
Finally, thank you so much for making a quilt for him. He finds huge comfort in snuggling down into a quilt or blanket with a good book. I think they make him feel safe and I know that his quilt will be cherished.