I have the true privilege to be the Chair of Hannah’s Fund. I am working alongside some wonderful volunteers who have given their time and skills to turn the dream of Hannah’s Fund into a reality.
The idea of Hannah’s Fund came together after the more than generous gifts and donations that followed from Hannah’s funeral in December 2014. We felt strongly that we should turn a negative into a positive and with the pot of money raised we could help other young people with craniosynostosis, like Hannah, with their mental well-being.
Hannah, mostly, bounced back from the many surgeries she underwent but the mental health side was often a real struggle, particularly once she moved from primary to secondary education and then to university. She was often in severe pain, sometimes on PEG feeds for nutrition and with a trachy which prevented her from doing the things that all her friends and siblings were able to do.
Hannah felt that there was very little help available in the way of counselling or psychotherapy. She had a strong supportive network of family and friends but she did not want to burden them with her worries and fears. This feeling is very evident in her book ‘Invisible Struggle’.
So the long and the short of it is the charity Hannah’s Fund ... a charity to support people affected by craniosynostosis. I know she would be immensely proud of what the charity has achieved in a relatively short space of time...she would be so chuffed that her family and friends have heard what she was saying and are doing their utmost to make a difference.