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.