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Welcome to the Children’s Hyperinsulinism Charity

This charity has been founded by five parents, all of whom have children with Congenital Hyperinsulinism (CHI).  

All five parents have been actively helping families and raising funds for a number of years now for research into CHI and for the benefit of other families across the UK and Ireland.

The Children’s Hyperinsulinism Charity (CHC) is about families first and foremost, about the children who have CHI and about their siblings and parents and extended families.   

CHI is a rare chronic condition which affects around 1 : 50,000 babies in the UK and around 1 : 27,000 babies in Ireland. 


 Mission statement

The Children’s Hyperinsulinism Charity (CHC) has been created by parents who have children with Congenital Hyperinsulinism (CHI) and are passionate to provide support for other families who also have children with CHI in the form of conferences for education and socialisation, bringing families together to support each other, festive parties for the children and when possible other gatherings throughout the year and around the UK and Ireland.  CHC will also aim to raise awareness of Congenital Hyperinsulinism throughout the UK and Ireland and we will support world class research into Congenital Hyperinsulinism.

The Children’s Hyperinsulinism Charity relies completely on voluntary support to gain funds to help us achieve our goals of helping families and supporting research.

Giving just £3 per month by standing order will help children with Congenital Hyperinsulnism.


Meet the team

Adrienne Burton

Jessica & Adrienne

Hi I'm Adrienne and have one daughter, Jessica, who is in 2015 is a happy 15 year old, she was born with CHI.  Jessica’s story can be read on this website.

I’m a legal secretary, having worked for the family firm for almost 30 years.  My life changed dramatically in 2000 when Jessica was born.   I had to learn very quickly how to look after a baby with CHI and with diabetes after the removal of Jessica’s pancreas due to CHI.  The emotions of having a child with a chronic condition are extreme as well as having to learn the practical side of it very quickly.   

However I managed to turn this into a positive for us both.  I am heavily involved in the world of paediatric type 1 diabetes.  I’m a parent representative for the South East Coast and London Paediatric Diabetes Network working with clinicians and other medical professionals to shape the care for children with diabetes in the UK, I am the vice chair of the Families with Diabetes National Network, a co-ordinator of the UK Children with Diabetes Advocacy Group and I help families around the world with Type 1 Diabetes and CHI.   I also started the HI Fund along with my friend Julia Killengray back in 2003.  This is a Fund within the Special Trustees Charity of Great Ormond Street Hospital for Children and it supports research in CHI.   We also have a support group on Facebook which has grown over the years and I am one of the admin for that group.

We love going away on holiday when we can and I enjoy spending time with my family and friends.  When I find a rare minute I also find nothing more relaxing than reading, Facebook :) and Twitter and going to the cinema.

Michelle Walkley

Michelle & Alliza-Lily

Hi, I'm Michelle and I'm a mum of three.  My second child, Alliza-Lily was diagnosed with CHI at 6 days old and you can find her story here on the website.

I've worked since the age of 16 in various Administration roles, my last one being for over 12 years at Oxford University Press in their Customer Service Returns Department.  It was always my intention to return to work following the birth of Alliza-Lily but life took a dramatic turn and I'm now a full-time mum and carer.  My daily life now consists of Alliza-Lily's medical and feeding regimes along with physio and various other therapies.  My admin and communication skills have certainly been utilised since finishing work and I liaise with over 20 professionals involved in Alliza-Lily's care.  

Since Alliza-Lily's diagnosis, I've always wanted to do more to raise the profile of Hyperinsulinism and 2014 saw me do a tandem skydive, hold an Indie band night and get my local MP involved.  I've since become a member of the HI team and run the Twitter page.  I am proud to be part of a 'family' that are dedicated and passionate about something that affects our children daily and who are strong advocates in raising awareness of such a complex condition.

As for myself, there is very little 'me' time but on the odd occasion I do like reading, musical theatre and gardening.

Kirsty Pope

Kirsty Pope

Hi I'm Kirsty and I am mummy to 5 year old Imogen who was diagnosed with CHI just before her 1st birthday, after spending many months in and out of hospital.

I work full time in the housing industry as a Sales Executive which I love to bits but it is very much a role I fell into after having to give up my nursing studies when Imogen was born and quite poorly.

When I'm not busy at work and Imogen is at school (or asleep!!), I enjoy going to the gym, reading books, watching TV dramas and organising fundraising events!!

I have helped organise lots of events since Imogen's diagnosis including casino nights, raffles, a teddy bears picnic and I am currently working on a Virtual Run; all in aid of the Children's Hyperinsulinism Charity!!

Family time is very important in our house as we spent so much time in hospital when Imogen was little; on our family days together we enjoy taking our dog Barney out on long walks, going on bike rides, going out to the cinema and going for meals out!

It was a great honour to be asked to become a trustee for the charity and I am very excited to now be apart of the CHI Charity family!!! 

Amanda Dean

Amanda 1
 
Hi my name is Amanda and I am a mum of 2 . My youngest son William was born with Hyperinsulinism. 
 
Before I had William I worked full time as a manager of a Learning Disabilities Home for Adults. I was the registered manager and was in charge of the day to day running of the home, staff and service users . I spent my time working alongside social workers, health care professionals and CQC. I always planned to return to work after having William but  unfortunately due to his high medical needs and development delays this was not possible. I became his full time carer. 
 
I love being a trustee and raising awareness for this amazing charity. In my spare time, when I get it, I love running.  I run with a local running club who have helped me train for a half marathon. I also love holding fundraisers and raising awareness for William's condition.
 
This journey is certainly tough at times but because of this charity I know am not walking it alone. 

 

 

We are a registered charity with a board of trustees

Trustees :

Adrienne Burton : Chairperson

Bridget Burton : Treasurer

Michelle Walkley

Sarah Dearman

Amanda Dean

Kirsty Pope

 

Courage Hope Inspiration

The Children's Hyperinsulinism Charity
Registered Charity Number: 1165562

The CHC is set up by parents for parents

For any medical advice, you should always contact your specialist medical team.

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