I was appointed a Trustee at the most recent Annual General Meeting in February 2020. I’ve watched the charity take shape from an initial idea to what it is now, a fully functioning reality.
As Hannah’s parents we learnt quickly the skills and knowledge needed to keep her going. All too familiar routines of one of us doing a weekly trachy change on a Saturday morning at home on her baby changing mat. Of responding throughout the night as breathing machines, oxygen levels, heart rate, suction devices and medication set off the shrill beeping alarms. These were the actions of any parent but the time comes when your lovely, thoughtful and caring teenager deals with the world on the world’s terms.
Hannah found simple things hard, not through any fault of her own, but because of the huge emphasis we place on how a person ‘looks’. Comments uttered by people passing by, reactions from other adults, socialising, love and friendships are all part of the daily life of a young adult. Hannah looked ‘different’ but boy when you got to know her you found a huge heart, a wicked sense of humour and more courage and bravery than you will meet in many a lifetime.
Thanks to the inspiration and dedication of a small number of truly special people, the charity ‘Hannah’s Fund’ is helping to provide support and a listening ear to several young people affected by craniosynostosis. Hannah would be so proud of the help that the charity provides.