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GOSH- Please be advised these funds are for GOSH Hyperinsulinsim Fund Ref SH16.
Amelia was born with a very rare condition called Congenital Hyperinsulinism. This is where the pancreas over produces insulin resulting in very low blood glucose levels. This can result in brain injury, developmental problems and even death.
Amelia was born at the Queen Elizabeth hospital, Kings Lynn and spent some time in NICU before the team realised that she required special treatment for her condition at one of the nationally designated centres for the condition at Great Ormond Street Hospital for Children.
Amelia was an in patient at Great Ormond Street for 4 months, where she was diagnosed with the diffuse form of the disease which affects the whole of the pancreas.
Amelia was discharged from Great Ormond street as an out patient at 4 months old on 4 injections a day, strict 4 hourly feeds and she was to take an additional oral medication called Sirolimus. This treatment involves taking an immuno suppressant oral medicine called which is used in the treatment of kidney transplant patients and to reduce the size of tumours in cancer patients. It has a side effect of increasing blood sugar levels which helped keep Amelia's blood sugar stable.
At 5 months old we noticed that Amelia was constantly ill. Amelia never seemed to be clear of illnesses for long and at 6 months old Amelia took a turn for the worse. Amelia became very poorly and was admitted to hospital, Amelia's condition was life threatening so she was transferred to Great Ormond street intensive care where she was ventilated.
Amelia's drug which was allowing her to be at home was making her very ill, so there was no option but to stop the Sirolimus. 2 weeks later Amelia was well enough to come home but we now had terrible concerns over Amelia's blood sugars, as without the sirolimus she was unable to maintain them.
Amelia returned to Great Ormond Street for a profile and fast. The results were not great as Amelia could not last even 2 hours before dropping to dangerous lows.
The decision was made for Amelia to have a Gastroscomy inserted to help with feeding as at 6 months old she was exhausted with being woken every 2 hours to feed.
Amelia also doesn't eat to great – another common problem with the condition. Amelia is attached to a pump overnight to keep her blood sugars stable by giving her small doses of a special water with added carbs to maintain her blood sugars.
Amelia is very unpredictable, so even now she can not be left any longer than 3 hours without a feed. If she doesn't want to eat then she is fed through her PEG.
Every family is different and no one child responds exactly the same.
The Children’s Hyperinsulinism Fund charity was set up by some parents and nurses as a result of a need to raise money into research into the condition as none was being carried out and to provide support to families of the children affected. It is a specially designated part of the Great Ormond Street Hospital Charity where the funds raised are kept separately from the main fund. Over the last 15 years the charity has raised over £300,000 which has paid for groundbreaking research into the condition and also pays for an annual children’s Christmas party for the children and their families.
More information on the charity can be found on the websitewww.hi-fund.org.
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