My identical twin sons, Cameron, and Alexander, were diagnosed with childhood onset cerebral adrenoleukodystrophy (ALD) in 2002, up until then we had just been a normal family enjoying life…
Christmas has changed a lot for us over the years, when Cameron and Alexander were diagnosed it was near to Christmas and Cameron went into Bristol Children’s hospital just three weeks before Christmas for his bone marrow transplant, to try and halt the progression of the disease. He spent the whole of Christmas and New Year 2002 in isolation, which was extremely difficult and added to that Alexander had deteriorated and didn’t understand why Cameron was in hospital. Alexander was too symptomatic to have treatment. But we made it the best day we possibly could, and even had two Christmas lunches one in the hospital which I have to say was delicious, (including beer and wine!!) and one back in our home from home which was provided by the Rhys Daniels Trust. As you can see, Cameron wasn’t particularly happy to be in hospital at Christmas!This was my youngest son Glenn’s first Christmas, he was only 3 months old so thankfully didn’t know what was happening, obviously this wasn’t the Christmas we had planned with our 3 boys.
We had one more Christmas with Alexander, which although looking back was just the worst possible time, we had a lovely day surrounded by our family, and as Glenn was only one, he entertained us all!
We have got used to our new normal, it’s been a long road, but we always celebrate Christmas and have fun, the day starts with Jonathan’s infamous cooked breakfast, present opening and me cooking Christmas lunch. Alexander is always in our thoughts, and we wish him a Merry Christmas on Christmas morning and talk about all our happy memories. We have Christmas dinner around 4pm, paper hats included! As you can see Cameron loves a beer and Glenn now joins him too.
Cameron loves Christmas and really enjoys ripping the paper off his presents, laughing his head off, for those who know Cameron you know how infectious his laugh is!
It’s much easier now to know what to buy for him, he is 25 and loves aftershave and new clothes, it used to be very difficult when he was younger as it felt like he should be getting ‘normal’ presents which just weren’t suitable for him. Glenn loves spending time together as a family and we will have a game of monopoly which will last at least until after Boxing Day! Even Jinx (the dog) joins in with the festivities!
I feel very privileged to be part of so many of our wonderful families lives who are living with leukodystrophy and all the heartache that brings, thank you for allowing me to be part of your journey, I would like to wish you all the very best possible Christmas, my moto is live, love and laugh especially at Christmas.
Thinking of you all xx