Joshua

We had placed the last bauble on the Christmas tree and turned the fairy lights on. It was 18 December 2008, a week before Christmas day, when we received the call we had been waiting for. We were told: "Baby of eight weeks and a three year old. We'll bring them around at 8pm tonight". As foster carers we had to be prepared for anything, so the next few hours were a mad rush of organising, including a quick trip to the shops for baby essentials. Alan had just finished tightening the last nut on the cot when they arrived. Our journey had begun. 

Not long after Joshua arrived, we noticed something wasn't quite right with his hips and explained this to the GP at his late eight week check. X-rays showed nothing abnormal but over the next few months we made careful notes of his development: when he was still losing balance, hadn't crawled, only cruised around holding onto furniture, constantly rocking back and forth and only sleeping around eight hours out of 24. 

The following September we were joined by Joshua’s baby sister straight from the maternity unit and our family expanded. More sleep deprivation! It was now Christmas 2009 and we made putting up the tree on 18 December as a symbolic reminder of when our first foster children came into our home and changed our lives.

As Joshua failed to reach even more milestones we insisted that he was looked at again and eventually received the devastating news that he had a terminal muscle wasting condition called Duchenne Muscular Dystrophy or DMD as it’s more commonly known. It was June 2010 and only a few days after he had taken his first steps alone. He was 20 months old. The dystrophin gene in your DNA is made up of 79 exons, like jigsaw pieces that fit together, if one or more is missing, duplicated or spliced then DMD is diagnosed. It destroys all voluntary muscles — eventually reaching the heart and breathing muscles. To date there is no cure. The diagnosis of DMD changed Joshua's future as the care plan for him and his two siblings altered and only they went together to live with a forever family. The day they left our care, we held Joshua that little bit tighter and made the decision to adopt him. Our love for him was unconditional. We were going to fight with every breath we had to ensure he became our son.

We were told "he's such a complex child". With each month that passes we discover something new about how DMD affects him and what could help. From the initial diagnosis in a small consulting room and just being handed a leaflet; I have become like a detective, researching everything I can about Joshua’s condition so that I get as much support as I am able, to help him live a full life. Currently we're waiting for an autism assessment, a wheelchair assessment and access to hydrotherapy. Nothing is easy when you have a child with special needs, including the most profound one of all, housing. We worry about Joshua's needs now and in the future and how we will be able to provide the safe family home he so desperately needs and deserves. Every day brings challenges but we try to make treasured happy moments for him and find ourselves looking back at photographs and videos reminding us all of when we made those wonderful family memories. 

Last year we were given a special guardianship of another foster child. To Joshua, Summer-Jane is his sister. They do everything together. Joshua loves dinosaurs, Transformers, Minions and spending precious time with his biological siblings who were adopted separately. At the beginning of this year we relocated to be closer to them and this gives him more opportunity to see them. 

After we attended the Together for Short Lives conference in Birmingham in April 2014, we had the courage to talk to Joshua about what it means to have a life-limiting condition. He speaks about different stages in his future with such maturity: from what colour wheelchair he would like, to positively thinking about the type of car he could eventually drive. It's always “not if he could do things”, it's “how he can do things”. Joshua has made a bucket list which includes: holidaying in a caravan we can drive, a trip in a classic car, meeting the real Father Christmas and going to the top of the Empire State Building - like King Kong! Christmas is a positive time for us, one where dreams can be imagined and hoped for, a time when we're thankful for the day he came into our lives and changed it forever. 

Karen, Joshua’s mum