Welcome to our page for families living in Ireland.
There is also a facebook group with many Irish CHI families already, please feel free to join. Search for Children's Hyperinsulinism Ireland.
Sharon has a daughter called Ciara and this is their story :
Ciara had problems with her blood sugar at birth but like many HI children she went undiagnosed till 10 months old. She was transferred from Limerick hospital to Crumlin in Dublin, where here they suspected from genetic tests that her form of HI could be focal.
It was decided that she would be sent to Great Ormond Street for further investigations. At the time there was the volcanic ash eruption in Iceland and no planes were allowed to fly. We were fortunate enough to be given the government jet to fly to London.
She then needed a detailed scan of her pancreas which could only be done in Berlin at the time. Unfortunately the scan revealed that her HI was diffuse and surgery was not an option.
On returning to Great Ormond Street Ciara started on Octreotide injections. The medication worked well for her and after 4 months in 4 different hospitals she returned home.
When Ciara was 3 years old she was fortunate to be chosen to try a new type of medication for HI, Lanreotide.
Ciara is nearly 7 years old now; the Lanreotide injections have changed her life and that of our family. She has gone from 4 injections every day to 1 a month. This medication has given Ciara the freedom to be a regular little girl going to friends’ houses and even having sleepovers!
It has been some journey but along the way we have met so many amazing people, seen amazing things and have had the best support from our families and friends.
We now would like to give back and help others who find themselves on this HI journey.