Background of the UK Hyperinsulinism Support Group

The Children's Hyperinsulinism Fund was started up by Dr Khalid Hussain, Nurse Nicky Mumford, parents Adrienne Burton and Julia Killengray in 2003 with Nurses Ginnette Flinn and Clare Gilbert joining soon after. The Children's Hyperinsulinism Fund helps children in the UK and around the world who suffer from Congenital Hyperinsulinism. It is striving to find lifelong answers to the problems that these children face daily. 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), also known as Persistent Hyperinsulinaemic Hypoglycaemia of Infancy (PHHI).


Our Own History

When our daughter, Georgina, was born in March 2005 she was the only child in Northern Ireland with the medical condition of Hyperinsulinism. As there are now approximately four families in NI with children with the medical condition of Hyperinsulinism (HI), we feel led to set-up a NI Support Group.

You can contact me here: Christine Bailey


Northern Ireland Hyperinsulinism Group (NIHIG)

Summary of Activities of the HI Group The Aims of the NI Hyperinsulinism support group are

- To help raise awareness of the medical condition of Hyperinsulinism and how it affects families/carers and children alike. Various information leaflets are distributed about HI. Fundraising

- We propose to continue with our various fundraising activities and feel that being a "local" group will help with this. We forward all monies received to GOSH (Hyperinsulinism Fund Ref: SH16) Advice/Support

- This is our main aim. We will be a local point of contact for families wanting advice, support or just a chat about HI with another parent/carer who knows what they are going through.

We have forwarded our contact details to the Consultant Endocrinologist at RBHSC a Dr D.Carson for those who come under his remit, with a child with Hyperinsulinism. There is no membership fee or any financial commitment to members. It is great to be starting a group in NI. A few years ago, HI parents were very few and far between, but since Georgina was born in 2005 we now know of another four families, so at least five children in Northern Ireland now have this condition. The children all have their condition controlled by various treatments, either medical (medication) or surgical (undergoing surgery).

The power of the internet is changing the ease of making contact with others. We trust by setting-up this Northern Ireland Support Group we will be able to fulfil our aim of assisting and supporting others.

The UK Support Group www.hi-fund.org

There is also a great worldwide discussion/support group on Yahoo.

Thanks
 

RSS