'˜Sam's a fighter and I'm so proud of him'
Eight-year-old Sam Merrick has been through more in his short life than most of us will ever have to face.
Born prematurely, his parents were told he was extremely unlikely to survive, but against all odds he pulled though. Over the years, Sam has endured endless trips to hospital since his birth because of a chronic lung disease and a rare immuno-deficiency disorder, which means his body’s ability to fight infectious diseases is compromised.
Despite this, the brave and cheeky lad never complains but meets every challenge with a smile. Today he’s full of energy, attending a mainstream school and has just returned from a family camping trip for his birthday.
His parents Louise and Paul say they could not be prouder of him.
Louise, 35, from Denmead, says: ‘He is such a little fighter and I am so proud of him. He always has a smile on his face and he is so trusting. He knows that his treatments will hurt, but he’s so brave.
‘When he was born at 26 weeks, we were told that he had just a five per cent chance of survival.
‘I remember I didn’t fully comprehend what was going on or what I was being told. You are experiencing all these emotions and hormones so you don’t take in what the doctors are telling you.’
Sam had to remain in hospital for several weeks after his birth because of how seriously ill he was.
At 15 weeks and one day old, Sam was finally allowed to come home to join his family, which includes brothers Jordan, 15, Kiran, 11 and Liam, 10 – although Louise describes it as a bittersweet moment.
‘We still didn’t think he would pull through at the time, but we wanted him to be at home if it did happen rather than having spent his whole life in a hospital. On one hand, it was great for him to be at home with the whole family, but it wasn’t the normal happy milestone you imagine when you bring your baby home for the first time. It was a mix of emotions really. The boys started to form a bond with him too, which I was worried about.
‘When he pulled through we were told that he had very little chance of making it to the age of one, then two and so on. Then when he was three, we were told he wouldn’t make an hour let alone the night.’
It was at this point, Louise and Paul, 40, were told that unless Sam had a bone transplant he wouldn’t live to see his fifth birthday.
So at the age of four, Sam had a bone marrow transplant from his brother Kiran who was a 100 per cent donor match. Despite that, Sam was given only a 20 per cent chance of survival.
Louise says: ‘We understood the odds were really low, but we knew it was his only chance. Kiran was really brave. He did say he was scared on the day of the operation, but he was really good, and didn’t make a fuss. As much as Sam needed the transplant, we always made sure it was Kiran’s decision and we would never have forced him. It was his body and his choice.’
Sam is attached to an oxygen ventilator around the clock, which he carries on his back, has regular appointments at the QA Hospital, endures physiotherapy and takes medication daily.
Despite this routine, Sam, who has a ‘wicked’ sense of humour, scarcely complains and much like children his age, regularly fights with his siblings and has a love of Minecraft.
Louise says: ‘He’s really happy and, despite being attached to oxygen 24/7, he shows very little sign of knowing he’s different.
‘It’s not easy though, there were times when Paul and I would question whether we were doing the right thing. You couldn’t kiss him, touch him or play with him, all these little things you take for granted. We would think “are we pushing medicine and treatment because we can or rather because we should”.
‘But Sam is a little fighter, he always has been and that’s why we kept going.’
Sam attends Denmead Junior School, where he will be going into Year 3 in September, and Louise says her son is ‘thriving’ there.
‘He was really nervous when he first started because he had been isolated for so long and has difficulties socialising with other children. Now he loves it, he has a great group of friends and they all adore him.’
The family have recently returned from their first camping trip to celebrate Sam’s birthday which was on August 9 – something which they feared they would never be able to do.
‘Sam wasn’t content with just picking up a catalogue and choosing some toys. He said he either wanted a real-life mermaid, a baby sister or to go camping, so we decided on the latter,’ laughs Louise.
‘But we couldn’t go proper outdoor camping because of all the risks and all the medical equipment. But we’ve found a glamping site in Bishop’s Waltham which could cater for Sam and had the space and facilities for the ventilator, all the medication and other equipment which we had to bring.
‘It was a surprise gift, so on the morning of Sam’s birthday we told him that he needed to go and pack for camping and he was over the moon.
‘It was so lovely that Sam got to have his camping wish come true. He loved it and says it was the best birthday ever.’
THE MERRICK family set up a charity called Sam’s Haven three years ago to use their experiences to help other families going through similar situations.
The charity provides short respite holidays at a Haven Holiday Park for families who have children with a life-threatening or terminal illness.
Louise says: ‘It’s amazing how a three or four-day break can make a world of difference to these families.
‘It’s not what anyone wants or signs up for, you would never wish your child or anyone else’s to be ill. There were times we would struggle but everything we have been through as a family has made us a stronger unit. It’s hard to explain but something good has come out of everything. It’s great to be able to use our experience to help others.’
Louise and Paul are both full-time carers for Sam and son Liam who has autism. They juggle this with keeping their household of six in order, which includes as Louise says ‘trying to get my teenager out of the bed in the morning.’
‘We are just a typical family who have just had a difficult past eight years,’ she adds.
‘We are not the only family who have had testing times. Family life is behind closed doors and there are a lot of people out there struggling more than you think.
‘I’m proud of my whole family and of Sam - It just shows that having a condition like this doesn’t mean that you can’t live a happy, full life.’
For more information about Sam’s Haven visit samshaven.com.