The original support group was started by Julia Killengray, a mum in the UK who has two children (now grown up teenagers) with CHI in around 2002. She ran it single handedly with support from Adrienne Burton, this was before the explosion of social media when all we had was a typed newsletter with information for families and posted by good old fashioned snail mail.
Moving forward a few years and facebook entered the world with a bang and this has proved a huge platform for support groups for each and every medical condition known to man. CHI is no exception.
Helen Milne started the Children’s Hyperinsulinism UK support group adding three others as admin in the group. Julia at that point took a step back as her children are now older and Matt Hammond took over her database for the support group.
Having the support and just a few ears to listen to from people who just ‘get it’ cannot be compared to anything else. The comfort that parents feel and get from other parents is an absolutely necessary part of the CHI life we all lead. It was a life we did not choose or want but it is our life and by being around others, whether it is in person or online, is part of that life.
The Facebook support group is purely for parents (or carers) of children with CHI. There are such personal details shared that we send a message to all people asking to join to confirm they do have a child with CHI. Some parents need to keep the group just for them and do not necessarily want extended family members involved at that level. The group is a closed group which means that only members can see the posts.
We have a Facebook page which is open for everyone to view where we will be posting information about CHI, events and families.
We asked for comments on the facebook group from parents about what the support group meant to them:
Having people that fully understand without passing judgement. It's also a safe haven for those days where I'm angry at the world and think why our baby. I look at the page and think…...but look how happy they all are!
Without the group we would be isolated, we have learned so much from others stories and gained valuable advice about day to day life with the condition
This group helps me get through the bad days and celebrates the good days with me. It also gives me hope for the future. I have gained friendships that will last forever, even though some of us have never met.
I thought I was alone in this nightmare
With help from others I saw there was a future for our daughter. That made a difference for us when we stayed in hospital for six months.
A doctor can tell you lots of things but not as a parent who has been there
It’s so nice to have the support of other parents, knowing you are not alone.
Just the fact that you think you’re alone and that you’re the only one dealing with this. This group has opened up a load of people going through what I’m going through, we’re not the only ones.
This group has been my saving grace. The wealth of knowledge and experience in this group has been invaluable to me and my son.
No one understands the emotional and physical challenges of being an HI parent like a fellow HI parent. This group offers non-judgmental support to parents all over the world. It's been a saviour more than once to my sanity!
Having people who fully understand how serious a condition HI is. Absolutely no one around us knows or had even heard of the condition (including doctors!) And we have had so many comments such as "oh but it’s not life threatening" or "they can just give her a transplant it’s not that serious". (<< that came from a trainee nurse believe it or not!)
It reminds us daily that although our child may be the only one in this area of Scotland with the condition we are not alone and on the bad days that can be a saving grace.
This group is vital. Nobody else understands this condition like all of us. Everyone is very knowledgeable and has answered any questions and queries I have had no matter how silly.
For years we felt on our own, nobody understood what we faced day to day. We struggled with the unknown not knowing what the future would hold for our daugther, we had lots of questions which nobody could answer. Then we found the support group which has become a life line for us. No matter what time of day or night there's always someone there with advice, help or even to chat. We can now see the way forward knowing that someone has gone before us and faced the same problem and can help us through and hopefully we can also help others.
This group stops you from feeling hindered by a rare condition instead it makes you members of a special club, for superheroes and their families
The group means so much to me. I'd feel so lonely without it and as if no one understands me. I wouldn't be able to cope without all the advice I get. I ask the most silliest things but I know everyone on here gets me and I feel like we're all a little family.
I don't feel alone and isolated.
I feel supported.
I don't feel a burden.
I can talk about my worries and concerns with other parents that 'just get it'.
I don't feel intimidated.
I've made new friends.
Seeing other children develop gives me hope.
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.
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!!
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!!!
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.
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.
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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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