Trevor Dunlop
Ellie&Sam's 100 Mile cycle for Hyperinsulinism(HI)
Fundraising for Great Ormond Street Hospital Children's Charity
Story
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Driving rain, unrelenting wind, but that didn't stop our boys; not only did they battle through, but they finished well over an hour ahead of schedule! 15,000 spent calories and 6.5hrs later they crossed the finish line, with Ellie & Sam, having completed a gruelling 100.3 miles! Incredible!! Sore bums & legs, but they looked annoyingly fresh! We're extremely proud of them and all their hard work and committment. Thankyou Granda Clarke, Great uncle Colin and Uncle Alan; and thankyou to everyone who has very generously donated to suppport the invaluable Hyperinsulinism team at GOSH.
Hyperinsulinism(HI)
Great Ormond Street Hospital (GOSH) in London is currently one of only 3 specialist centres in the world where children with this rare genetic condition can receive treatment. Each year the hospital treats approx 15 children. Suffering from HI means that the regulatory mechanisms in the pancreas do not work and as a result insulin is produced and released into the bloodstream in uncontrollable amounts. The consequence of this is that there is too much insulin in the blood, which lowers the amount of glucose in the blood to a dangerously low level. These low blood glucose levels can affect all the body systems but are particularly dangerous for the brain as the brain continually depends on glucose for its function. This is why these children are at an increased risk of brain damage. Ellie and Sam both have a very severe form of HI which means the whole pancreas is diseased and unresponsive to drug therapy. In these cases the only option is to surgically remove almost the entire pancreas, an operation which carries a high risk of complications. These children also suffer from feeding problems and the majority have to follow a strict feeding regimen via a tube which is inserted into their stomachs. They also suffer from severe vomiting, for which a cause has not yet been established. Ellie’s Story Ellie was born on 2nd July 2007. We realised something was wrong a few hours after bringing her home from hospital and she was taken back to Causeway before being transferred to Antrim Area Hospital and finally to the Royal where she spent 10 weeks before being flown across to Great Ormond Street. We then had to travel to a hospital in Berlin for a week where Ellie had a specialist scan which diagnosed the severe form of HI. She had a 98% keyhole pancreatectomy in Nov 2007 which improved her condition enough to allow us to manage her at home on a very strict medical and feeding regime. A few months after getting home with Ellie it became apparent that her liver was not functioning properly which was later found to have been as a result of damage caused to her bile duct during her pancreatic surgery. Since she was clinically “well” at the time the decision was made just to keep an eye on things and hope the problem would settle down. However while we were in Great Ormond Street with Sam in July 2009, Ellie became very unwell and had to undergo two emergency operations. These were initially thought to have been a success and her bile duct/liver problems to have been resolved. However in January of this year it became apparent that this was not the case. Ellie underwent further major surgery in May 2010 which is expected to provide a long term solution. Ellie is a very active, happy three year old and thankfully leads a full and “normal” life. She still needs to be feed continuously overnight via her feeding tube and we still have to keep a close eye on her blood sugars, but her HI is stable and manageable. Sam's Story Sam was born on 10th Feb 2009 and he was diagnosed with HI at birth. He spent his first week of life in the Neonatal intensive care unit in the Royal and was transferred to Great Ormond Street when he was 9 days old. We had 10 long weeks of various drug trials but after no success Sam had his first pancreatectomy in April 2009. Unfortunately he had a massive bleed during the operation and they only managed to remove 90% of his pancreas (instead of the intended 98%) which meant managing his blood sugars was still extremely difficult. We finally got Sam home at the end of May 2009, on a regimen which required, amongst other things, continuous 24hr feeding via a tube and injections every 6 hours day and night to try and suppress his insulin production. Sam also suffers from severe vomiting which made things even more difficult to manage. After only 6 weeks at home Sam became so unstable that we had to return to Great Ormond Street. After a 5 week stay and another operation (during which Ellie also had her emergency ops) we returned home with only a slight improvement in Sams manageability. This however was very short lived and we had to return to GOSH in Sep 2009 because his blood sugars were going dangerously low many times every day. Again the team tried all the possible options to stabilise Sam but after 4 weeks and no progress the only remaining option was a second pancreatectomy in Oct. After an initial positive recovery, Sam began to deteriorate very rapidly for no obvious reason, and subsequently underwent emergency surgery 9days later. During this operation they discovered that his bile duct was partially severed; they drained 500mls of bile (which is a very toxic irritant) from his abdomen and left a surgical drain in place. Sam remained in Great Ormond Street for another 6 weeks and went on to have further major reconstructive biliary surgery in Dec 09. He made a good recovery over the Christmas period and we returned home on New Year’s Eve. Sam is a very boisterous “wee man” and full of fun. Although not quite at the same stage as his sister, he’s making good progress and his condition is manageable. www.hi-fund.org The Children's Hyperinsulinism Fund helps children in the UK and around the world who suffer from Congenital Hyperinsulinism. The Children's Hyperinsulinism Fund is a Fund within the Special Trustees Charity of Great Ormond Street Hospital for Children. The Fund's aim is to raise funds for research into Congenital Hyperinsulinism (CHI). With the monies raised they hope to employ a full time Research Nurse, a Medical Research Fellow (Dr), Technicians/laboratory based people and equipment. Research is needed in many areas of HI including feeding difficulties, long-term neurological implications, consequences of medical therapy and understanding the mechanisms regulating insulin secretion. These are just a few of the areas that need to be researched. The Fund relies totally on voluntary support to fund their work. The Challenge On Sat 28th August Ellie & Sam’s granda (Clarke Stirling), great uncle (Colin Stirling) and uncle (Alan Stirling) plan to cycle a “bum numbing” 100 miles along the north coast of Northern Ireland, to help raise awareness and much needed funds for this invaluable service at Great Ormond Street Hospital. Uncle Alan has also completed a Trialthlon and half Iron Man, and plans to complete another Triathlon in Sept, with all the money raised going to the HI Fund - good work uncle Alan!
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