From isolation to influence: how an online parent community is informing care and research

ChILD Lung Foundation was set up in January 2010 after learning that our third child was diagnosed with a life-limiting autosomal recessive condition – surfactant protein deficiency ABCA3. 

ChILD (Childhood Interstitial Lung Disease) is a group of rare respiratory conditions where, in very simple terms, oxygen has difficulty in crossing over into the bloodstream. There are over 200 chILD conditions; however, even though there are differences in diagnoses, a lot of children with a chILD condition share the same signs and symptoms and can benefit from similar treatments and therapies.

Prior to setting up the charity, we had made some wonderful connections with other chILD families and the sharing of our experiences, hopes and fears inspired us to set up a formal organisation for other families to join. Despite chILD being rare, we did not want others to feel alone.

I had to leave my employment to become a full-time carer because childminders could not cope with his complex care needs. There were few park visits or mingling with other children because the oxygen tank only lasted so long. Feeding and medication regimes were constant, and any infection would set my son’s respiratory progress back. We lived in our own bubble. 

Meeting other families online affected by chILD gave us hope and helped with that isolation. We all faced different issues with treatment, diagnosis, iatrogenic issues, differences in access to services, and a fear of the unknown brought us all together. In addition to building an online support community, we also reached out to clinicians and researchers. These experts in the field of ChILD were very supportive and generous in their time and helped educate families on their child’s condition.

Unfortunately, there is little research into chILD. When one pan-European FP7 grant-funded research into chILD was ending and finding similar funding for research was difficult to find, with the help of the European Lung Foundation (ELF) and chILD clinicians, we applied for European Respiratory Society (ERS) Clinical Research Collaboration (CRC) funding.

This was a boost to allow the chILD research group to continue in its work. ELF also helped with bringing the international chILD organisations together in the form of building a Patient Priorities website and helped undertake an international survey of family experiences to help inform healthcare services.

As we move onto this next phase of taking chILD forward, I can’t help but feel excitement and we are looking forward to seeing what opportunities lie ahead.  We are grateful for the help from ELF and their amazing team. It has been wonderful to build new relationships that help accomplish our aim of supporting families affected by chILD and bringing awareness/research to chILD.

ChILD UK website: http://www.childlungfoundation.org
ChILD patient priorities website: http://www.europeanlunginfo.org/child

Carlee Gilbert is the Director of ChILD UK and is parent representative on the steering committee for the European Respiratory Society's Clinical Research Collaboration for Children's Interstitial Disease (cHILD)