Samuels Smile

About

About Samuels SmileI was born on the 25th of September 1998 in Inverclyde Hospital, Greenock. I was ten days late and weighed nine pound 11 ounces with a full head of brown hair. When I was born, I started being sick straight away and doctors told my parents it was normal but it didn't stop - this was obviously a sign that something wasn't right.

At 1 day old, I got transferred over to Yorkhill Childrens Hospital, Glasgow where i spent the next 11 months of my life. I had emergency surgery when I was only 3 days old and even then, doctors could not figure out what was wrong with me. During this surgery, I had bi-opsies on my intestines and they discovered that I had no nerves which meant I would not be able to able to eat or go to the toilet like regular babies. I had a central line placed into my heart for intravenous feeding (Total Parenteral Nutrition or TPN) and this would be my life line. I am on this pump 18 hours a day 7 seven days a week and while it keeps me alive, it also causes sever liver damage. I also had a gastrostomy placed in my stomach to drain my stomach and is used to give me the medicines I need and an ileostomy because I can't go to the toilet. After 3 weeks and further surgeries, they finally had a name for my condition - Total Intestinal Aganglionosis or Total Intestinal Hirschsprungs Disease. This was the first time in the history of Yorkhill Hospital they had a child like me.

The doctors told my Mum and Dad that I would probably only live for 3 months because I was so unwell and due to the complications with TPN. But even back then, I was starting to amaze the doctors. I had many more surgeries during my first year in the hospital, it was a terrible time for my parents and my big brother Martin who was only 5. They all moved from Dunoon and lived in the Ronald McDonald House and my brother went to school by the hospital.

The name of the surgeon who operated on me is Mohammed Hobeldine who is from Egypt. He has saved my life on numerous occasions, he even performed a surgery that had never been done before. He would always come into the ward early and come over to my bed to rub my hair because he thought it was so amazing that this wee boy he looked after has a full head of hair. Unfortunately, he moved to Abu Dhabi before my first birthday but we still talk and meet up when he comes back to Scotland or I go there.

I made it past the three months I was given to live and proved everyone wrong, but I stayed in the hospital for the first 11 months of my life. I spent my first Christmas there and Santa came to visit me too! It was a long journey at the start with having so many major operations, I had amazing nurses looking after me but my Mum and Dad were told they wouldn't be able to take me home because of that treatment that I needed. Thankfully, my amazing parents have learned all about my care and I was the first person to go home on IV Pumps.

The first 5 years of my life were hard, constantly having surgery and check-ups - almost every week, it become the norm for my family.

About Samuels SmileWhen it was time for my to begin nursery, my family were told I had to go to a special nursery. My parents fought this and I got to go Kelso Nurserry in Knightswood. It was a great nursery and my Mum would come sit with me every day to make sure nothing went wrong. I eventually got a nurses so that my wonderful Mum could have a break. And then came Primary School. My parents had to fight to get me into a mainstream school and I attended Bankhead Primary where I spent the next seven years. This was also the first time The Daily Record covered me and my story. On my first day of school, something unusual happened...GMTV came to my house so they could see me starting at primary school! They saw what a miracle it was and I was interviewed by Lorraine Kelly at just four years old.

In 2003, I was awarded the 'Womens Own Child of Courage' award. I got to go to London, stay in a really fancy hotel and then collect my award in Westminster Abbey! The cast of Eastenders, Coronation Street, Emmerdale and more were there - even Simon Cowell who was dressed as Santa Clause! I also got to go to 10 Downing Street to have breakfast with then Prime Minister Tony Blair, of course I couldn't eat so the Prime Minister brought his son along and we played with toys - it was a blast! Being given this was award was an amazing experience, even though I was a little boy, it was deinitely one of the coolest things ever!

In May 2004, I was nominated for The Daily Record' 'First Little Hero of Scotland' Award and was up against two other nominees. It was amazing to be nominated, my family couldn't believe it! When the awards night came, I ended up winning and this award means a lot to me. It has changed my life in so many ways.

During all this, I was still attending hospital. In 2006, I became very ill and almost lost my life. I was having a lot of internal bleeding that would last days at a time. I was sent to Birmingham Childrens Hospital to be assessed for a multi-visceral transplant because the TPN was destroying my liver. The transplant was the only chance I had, they wanted to give me 5 different organs which would result in less than 50% survival after 1 year and almost no chance of survival after 2 years. I was told I had no chance and I was put on the transplant waiting list.

We returned home to Glasgow, waiting on a phone call to say they had organs, but when we got home some of my bloods started getting better and my liver was showing signs of recovery. So we decided to suspend me from the transplant list to see if I would continue improving.

About Samuels SmileOn the 31st January 2007, I was gifted with a little sister called Savannah Rose, who has down syndrome. I had to learn sign language to communicate with her and I taught myself the alphabet & some words before she was born. She had a similar condition to me but wasn't as sever, she has a NG Tube for giving her milk, a central line and an ileostomy. I call her a mini-me because we have two things the same. She had a beautiful curl at the top of her head and never cried, I would sometimes fake being unwell so I could stay home from school and watch movies with her. Savannah stayed in the hospital for six weeks before coming home, sadly she passed away due almost ten weeks due to cot death. It's hard to cope with losing someone but losing my little sister and someone I could relate to was extremely hard and heartbreaking.

When Savannah was alive, my mum would only dress her in pink - no blue, no yellow, just pink. If you look at my logo, there is a pink heart which is for her because of this. She lives on in the charity and it means a lot when people walke around with a 'Samuel's Smile' badge on because it includes the heart for my sister.

On October 7th 2008 I got another little gift, my brother Micah. Thankfully, he was born healthy with no Hirschsprungs and he is a complete joy to the family.

I started going to Knightswood Secondary School in 2010. I won Actor of the Year which meant a lot to me as the judges had no idea about my condition so I knew I won it completely on my own merit.

Samuels SmileIn 2012, I won the Princess Diana Award for 'Courageous Citizen' for my work for patients on TPN and helping children that are in hospital.

In 2014, I was award 'Pupil of the Year' from my school for being an outstanding pupil and not letting my condition get in the way between achieving my grades and attending school.

For my work experience, I got the opportunity to go and spend the day with sports writers at The Daily Record and see how they work. I realised that this is what I would love to do when I'm older. After spending week there, the editor said that I was welcome to come back any time I wanted. For me, a boy who has spent their life unwell and living on pumps, to feel accepted by this group of people was a feeling I never thought I would experience. So I went back in the Easter and Summer holidays to work there and help out. I now work there every Tuesday and Thursday at The Daily Records Sports Desk - I have my own desk and laptop, I even have the opportunity to write and have my articles published every week. I'm even classed as part of the team!

On the 10th Anniversary for The Daily Record 'Our Hero Awards', I was asked to come back and present the award for 'Little Hero' award. It was such an honour because I got to meet people that remembered me from when I won the award way back in 2004.

Now the next chapter is here and it's all about spreading SAMUEL'S SMILE, it's not just my time but everyone's time to make children with rare diseases SMILE.

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