Declan’s Diary


Declan with friends from Oz(pictured)

It’s hard to believe I’m currently sitting in rainbows in the first week of February, where did January go! Declan currently has a chest infection which is really highlighting how weak his body is now, but thankfully his spirit is still super strong.

We had a lovely surprise last week when friends that we met in Australia came to visit. They had been planning this with my mum for six months, it turned out that they were in their UK for their Grandad’s birthday, and took time out to come to stay with us for a few days. Our look of surprise was priceless when they came through the door. Declan was in total shock!

Jack and Pru have remained very good friends of ours since we visited their beautiful country four years ago. We spent two weeks with them after meeting them whilst they were part of the entertainment team on Tangalooma Island. Declan made such an impression on them that they named their first child after him. It’s the biggest compliment a mother can get, to know what a stamp your child has left on someone’s heart. Unfortunately due to Declan being unable to fly we weren’t able to accept the invitation to their wedding two years ago, and were unsure if we would ever see them, besides on Skype, ever again. They truly are friends for life.

A good friend of ours who is 20 and also suffers from duchennes came to visit with his family a few weeks ago in his adapted van. A van just like ours but has a special conversion to allow someone with minimal upper body strength to drive. Declan had a little go, stationary of course and was smiling from ear to ear. When Declan found out that he would one day loose the?ability to walk the first thing he said was “Will I still be able to drive?” As a massive petrol head the thought of never being able to drive was devastating for Declan! Now he knows it is a possibility it has given him a whole new outlook on life.

Our friend James who visited also has a volunteer job that he does once a week. Some of you may remember me writing about a friend called Thomas who passed away two years ago this summer aged 16. Thomas was James younger brother, they both have the same mutation of duchennes yet one lost his life due to a chest infection at 16 and the other is still going strong and loving life at 20. It just shows there is no rhyme or reason why some boys are living longer than others, all I know is that Declan is an incredibly positive young man, and hopefully this will keep him with us for many more years.