Our history

In 2008, Tracy and her husband Craig were expecting twins to join older son, Ellis, when Tracy went into labour prematurely. The twins were delivered at 24 weeks.

Tragically, the family only had one day with their daughter, Eva. She was too sick and passed away the following day. Louis battled on, spending most of his first year in hospital facing multiple life-saving operations and procedures. It was an extremely stressful and emotional time for the Johnstone family, who faced the continual challenge of managing family life at home with Ellis, while making sure that Louis was cared for in hospital.

As the months passed, it became apparent that Louis had a life-limiting condition. He would need 24-hour care, 7 days a week and the family was faced with the stark reality that he may not live to adulthood.

Tracy and Craig were in desperate need of support. They explored all of the services and networks they could think of locally, but each time they were told that Louis' needs were too complex. The family were forced to accept that no support was available to them locally and began to make the regular 100 mile journey to the nearest support facility.

Feeling let down, Tracy and Craig felt determined to take action so that no other families would face the challenges that they had. They simply could not accept that adequate support wasn’t available locally for families like theirs.

Tracy brought together other families in the same position and began a conversation. They started meeting regularly to develop the idea of a charity that would offer the support they needed, so that no other family would face the difficulties they had.

And the rest is history.