Children's Hyperinsulinism Charity

Courage Hope Inspiration

Support Group

The support group was started in 2002 by two HI Mum’s Julia Killengray and Adrienne Burton.

The support group was then moved to Facebook by another HI Mum Helen Milne. We were delighted to amalgamate the support group into The Children’s Hyperinsulinism Charity’s Family Support Group. Together with Helen we ensure the support group is a safe and welcoming space, helping families to connect and answer any questions they may have. 

We also have a Children’s Hyperinsulinism Charity Ireland Support Group and we wish to say thank you to Joey Cummins who set up the group in 2014 and continues to support us as an admin.

Today The Children’s Hyperinsulinism Charity’s Facebook family support group has over 1.1k members and is growing daily.  We are proud to welcome new families signposted to us by our Hyperinsulinism Specialist Teams, who hand out our newly diagnosed packs, ensuring we reach more families at the most vulnerable time of diagnosis. We are also looking at more ways to reach newly diagnosed families through reaching new hospital sites, our social media campaigns and networking.

Having the support from people who just ‘get it’ cannot be compared to anything else. The comfort that parents feel and get from other parents is an essential part of our CHI life and community. 

The Facebook support group provides families with a private and secure space, where they can share experiences and help each other. 

We recommend that as well as joining our main facebook group you also join our other groups if they are appropriate for you:

Families in Ireland – Children’s Hyperinsulinism Ireland:

Young Adults – Hyperinsulinism Young Adults (HiYA):

Family Feedback on the Support Group

“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 daughter, 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’m reassured.
  • I’ve made new friends.
  • Seeing other children develop gives me hope.