I was born on the 25th of September 1998 in Inverclyde Hospital, Greenock.
I was ten days late and weighed nine pounds 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 Children’s 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 biopsies on my intestines and they discovered that I had no nerves which meant I would not be 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 lifeline. I am on this pump 12 hours a day 7 seven days a week and while it keeps me alive, it also causes severe liver damage. I also had a gastrostomy placed in my stomach to drain my stomach which 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 at 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. 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 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, became the norm for my family.
When it was time for me to begin nursery, my family were told I had to go to a special nursery. My parents fought this and I got to go to Kelso Nursery in Knightswood. It was a great nursery and my Mum would come to sit with me every day to make sure nothing went wrong. I eventually got a nurse so that my 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 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 Claus! 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 instead! Being given this award was an amazing experience, even though I was a little boy, it was definitely 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 the 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 Children’s 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 after being in Birmingham for many months, waiting on a phone call to say they had organs. But, thankfully some of my bloods started getting better and my liver was showing signs of recovery. So after being on the list for close to a year we decided to suspend me from the transplant list to see if I would continue improving.
On the 31st of 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 severe, she had an NG Tube for giving her milk, a central line and an ileostomy.
I called 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 at 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 an awful lot to me.
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 and left in 2016 after doing sixth year. Leaving with highers and other qualifications is something that I never thought I would’ve been able to achieve.
In 2012, I won the Princess Diana Award for ‘Courageous Citizen’ for my work for patients on TPN and helping children that are in hospital.
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.
In 2014 we launched Samuel’s Smile at my 16th birthday party! I have always said I wanted to help children who were in a similar situation as me with being so rare. Growing up because my condition wasn’t well known or it didn’t fall under any ‘categories’ there wasn’t really many other charities I could apply to for much. This is where my idea came about for Samuel’s Smile so for the kids who are so rare they could come to ask for a SMILE. My Mum surprised me at my birthday party with the logo, the name and the branding etc. It couldn’t have been better!
We then became a registered charity in late 2017 which was also a monumental step for us because this opened many doors.
Since the start of the charity, we have provided SMILES for over 85 families across Great Britain. We throw events like taking all our families to Blair Drummond safari park and our Christmas parties. However, we also grant individual SMILES to the children.
