Jamie’s story

Jamie Last was born premature and spent the first year of his life in hospital. Here is his story…

Jamie with our CEO Ryan Heal at the launch of the GI Unit in 2012

Jamie was born premature and taken straight to the Trevor Mann Baby Unit (TMBU), based within the Royal Sussex County Hospital in Brighton where, two days later, he underwent major bowel surgery to save his tiny life.

Doctors diagnosed Jamie with ‘short gut syndrome’, a condition where the majority of his small bowel had twisted and died. Months of procedures and round the clock care followed before Jamie could finally be taken home a year later. Jamie’s mum Tina remembers how daunting it felt to be out of hospital, she says: “I quickly had to learn how to carry out tasks like feeding him through a nasal tube and central line through his chest, we were so worried it would damage his vital organs.”

Under the watchful care of Dr A M Butt and his team at the Royal Alexandra Children’s Hospital (the Alex) located in a building next door to the TMBU, Jamie’s bowel began to re-grow and at five years old he began eating small portions of food. Starting with teaspoons of mash potato and steadily increasing his intake, Jamie could finally have his tummy peg removed twelve months later to eat normally.

For some years Dr AM Butt and his team had campaigned for better equipment to treat intestinal conditions at the Alex and in the autumn of 2012, Rockinghorse brought this ideal to a reality with the launch of a £25,500 Gastro-Intestinal Unit (GI Unit) at the children’s hospital. The cutting edge equipment now allows Dr AM Butt and his colleagues to monitor vital statistics like bone density and measure the effects of the different treatments given to children with gastro conditions like Jamie’s. 

Jamie still receives care at the Alex for recurring problems with his liver, kidney and spleen, but otherwise he is a happy, healthy 10 year old boy who loves to play with his little sister Bethany.

Here at Rockinghorse we are dedicated to continuing to work with consultants at the Alex and the TMBU to identify areas where we can make a real and lasting contribution to the care and treatment of sick children. It is with the support and generosity of our donors that can we actually provide the equipment, better surroundings and the support to achieve happy and healthy outcomes for the children of Sussex and beyond. 

An update…

We were delighted to catch-up with Jamie’s mum and dad, Tina and Gavin, this month (March 2017) for an update about how Jamie is getting on.

Jamie is now 14 years old, turning 15 in August. Living near Battle in East Sussex, Jamie is still an outpatient of the Royal Alexandra Children’s Hospital (the Alex) in Brighton, under the care of Dr Assad Butt. Jamie also has regular check-ups at both the Evelina Children’s Hospital in London, and the Conquest Hospital in St. Leonards-on-Sea.

Having been diagnosed with short gut syndrome from a young age, Jamie has continued to undergo treatment into his teens. Three years ago, he had 12 kidney stones removed and stents were inserted into his urethra allowing the stones to pass through to avoid surgical removal. Jamie also receives nutritional support, and relies on regular vitamin B12 injections to account for the lost part of the bowel that once provided them. Although he loves his food, Jamie struggles to put on weight and subsequently is smaller in stature than most boys his age.

Due to his medical history and time in and out of hospital, Jamie has had to repeat a year at school, and receives support from an individual needs assistant at Claverham Community College in Battle. He is now preparing to choose his GCSE subjects and particularly enjoys science, history and food technology. Outside of school, Jamie is limited in taking part in sporting activities, which can prove a danger to his condition. He very much enjoys time on his Playstation and X-Box and is really into cars, so loves watching TV shows such as Top Gear. He also enjoys spending time with his little sister Bethany, who is now 11 years old, and the family dog, Buddy (pictured above).

Upon visits back to the Alex, Jamie and his mum Tina pop in to see the nurses they met on the Medical Ward when Jamie was admitted for treatment. Tina recalls how important the staff have been to both of them: “I’ll never forget the support from the Alex and Conquest hospital’s – it has been vital to not only Jamie, but to our whole family. With Jamie being given an initial prognosis of two years to live, we literally lived our life day-by-day, making the most of every moment, and the support we received at that time was immeasurable.”

Having relied on the Gastro-Intestinal Unit at the Alex, funded by Rockinghorse, Jamie’s life was transformed thanks to the incredible treatment headed up by Dr Butt and his team. The experience has led to his mum Tina now working in the caring profession, helping patients with head injuries.

We wish Jamie and his family all the very best and look forward to hearing from them again soon.