Our daughter, Freya, was born in June 2019 and she has a condition called Achondroplasia, which is a form of dwarfism.
Very little is known about the condition (the chances are about 1 in 25,000 of having a baby who will have the condition) and most people think it is just a case of having shorter arms and legs. But there are so many more health complications that can be attached to the condition. When Freya was 2 weeks and then 5 weeks old she stopped breathing, resulting in lenghty hospital stays and multiple tests. But we are now home and she is doing really well. She will always have to have routine check ups throughout her life.
I am running the following events in order to raise money and awareness. If anyone would like to come and join me or support me on any of them then please feel free.
If you would like to support, please visit JustGiving.
Check out Gareth's fantastic interview on BBC Radio 5 Live where he talks about having a child with Achondroplasia and Little People UK.
We firstly want to offer our congratulations to everyone who has started school, transferred to secondary school, prepared for University and also anyone who has taken on a new challenge in September. Well done!
September was also a new experience for LPUK, where we attended our first Rare Disease Summit in Cambridgeshire. We met a great number of people from medical professionals, charity partners and Public Health England to name a few, all are great connections to help LPUK move forward and continue to support our members.
25th October marks International Dwarfism Awareness Day, where all dwarfism organisations around the world celebrate and raise awareness of dwarfism.
This year, Little People UK visited two schools - St Gabriels Catholic Primary School and Beresford Memorial First School to raise awareness, presentations were given to pupils and staff, to raise awareness and celebrate diversity.