This year, Silver Cross are proud to be supporting children’s hospice, Martin House, by raising money as well as awareness of the incredible work that they do to support families across the Yorkshire region. Here, Amardeep and Theo tell the story of how a Christmas party at Martin House completely changed their lives.
Last December, we were told the news no parent ever wants to hear – that our son Simba wouldn’t live to see his first Christmas.
He was only six months old, and his life had already been a battle. He wasn’t breathing when he was born and needed urgent help from the doctors – it was clear to us all that something was seriously wrong.
When Simba was diagnosed with SCN2A, a rare, life-shortening genetic disorder, the doctors told us the severity of his condition meant he may only have a couple of years.
But by December, he was seriously ill in hospital with a respiratory infection and his doctors told us they didn’t think we would survive.
We cancelled Christmas. We didn’t want to celebrate or see anyone. We were really angry at the world – we just wanted to shut our doors.
However, Simba was referred to Martin House, and we were visited by one of its doctors and clinical nurse specialists while he was in hospital. Initially we didn’t want to go to a hospice because of what we felt this meant for Simba, but they persevered and persuaded us to have a visit.
Amelia, the Martin House clinical nurse specialist who was working with us, then persuaded us to come to the Christmas party it puts on every year for families. It was one of our first experiences of Martin House, and it absolutely changed our perspective.
We met Sir Gareth Southgate, Simba danced with princesses and had a great time. We were in happy tears all the way round.
Our favourite part was when we were walking down to the Santa’s grotto. We’d already had a beautiful experience, with all the entertainment and food, and now we were going to see Santa, which was something we’d tried to do, but couldn’t with Simba.
The Christmas party was something we will keep forever – it was an incredible experience for us as a family because we can't take Simba to ‘normal’ events. But being around other families who are in the same situation, with no-one staring at your child, was life-changing for him and for us as a family.
It turned the tide and gave us back our spark and inspired us to be the best versions of ourselves for Simba.
When we got home, we built the Christmas tree. All of the family came to our house, and we got personalised T-shirts which showed how everyone was related to Simba. We even arranged for Santa Claus to visit and read Simba a story.
All that happened because of Martin House – Christmas now has meaning and is full of memories we’ll treasure forever.
Fortunately, Simba’s condition stabilised last Christmas, and we’ve continued to use Martin House ever since. We get all this amazing care when we are there – it really is the epitome of respite. But when we leave and come home, it feels like we’ve brought a piece of Martin House with us.
It’s like an extra layer of protection – we can speak to the doctors or nurses there and get the reassurance we need. Knowing we can pick up the phone at 2am, when something is wrong and we can speak to someone who knows Simba – it’s given us our life back.
We’re now planning our second Christmas as a family, and we want to pull out all the stops. Simba has given us a whole new meaning to Christmas, and we want everyone to be around us – and we can’t wait to go to the Martin House Christmas party again.
It’s important for us to tell Simba’s story, to encourage other parents who may be as scared and frightened as we were, so they know there are people who truly understand what you’re going through, and somewhere they can turn to.
