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.
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
Michelle Walkley(Joint Chairman)
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.
Hi my name is Sarah. My son Liam was diagnosed with Hyperinsulinism at the age of 13 months, he is now 14 years old. After graduating from University, I became a fully qualified Financial Advisor. However, after Liam’s diagnosis and neurological complications became apparent I was unable to return to work and became a full-time carer.
I feel very privileged to be a Trustee of The Children’s Hyperinsulinism Charity. I am passionate about supporting families and raising awareness. I am proud of how much our Charity has grown and achieved in such a brief time and look forward to the exciting projects coming up.
As Joint Chair and Project Manager, I have been at the heart of all our major campaigns, fundraisers, projects and events. I love the challenges and diversity this role brings, there is always something happening and its fantastic to be part of such a great Charity Team.
Any spare time is spent with my family and my two boys Liam and Mark who keep me very busy as they love days out, eating out and Pokémon hunting!!
Kirsty Pope(Joint Head Fundraiser)
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(Joint Head Fundraiser)
Mark Fisher(Digital Marketing Lead)
I am Mark. My wife Susannah and I joined the Hyperinsulinism family in the spring of 2015 when our beautiful son Hector arrived and set about causing confusion and delay in the local neonatal intensive Care Unit. Like most of the families on this site, we spent what seemed like forever living beside an incubator whilst different diagnoses were proposed and new treatments tried. We made it home eventually and began learning to manage CHI, and what a journey it has been. We were lucky to have a fantastic team surrounding us, and an early genetic diagnosis.
I am so privileged to be a trustee, and have an opportunity to give a little back having taken so much solace from other parents via the various conferences & facebook pages that got Susannah and I through the earliest months of Hectors diagnosis.
I have spent my entire career working in the pharmaceutical industry wanting to make a difference to the lives of patients and families, and now realise that for the last 21 years, I have just been learning the skills I needed to make sure that I could be an effective part of a team whose mission is to enable our charity to support families, engage and inform medical professionals, and challenge the status quo among those who can and will make a difference to the next generation of families who will have to learn to live with CHI.
We are a registered charity with a board of trustees
Adrienne Burton(Formaly Secretary)
Hi I'm Adrienne and have one daughter, Jessica, who is now in 2018 is a happy 18 year old, she was born with CHI. Jessica’s story can be read on this website.
I’m a Law Costs Draftsman for the last 3 years having worked as a legal secretary for 30 years 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.