My amazing little nephew Axel was born with myotonic dystrophy 3 years ago.

Myotonic dystrophy (DM) is a genetic condition characterized by progressive muscle weakness and wasting, often accompanied by myotonia (difficulty relaxing muscles after contraction), and can affect various organs and systems. Whilst Axel is doing amazingly well now with his wheelchair and stood for the first time just a week ago, his physical development and speech is severely delayed. Axel is not able to currently do the things a 3 year old would do. He has dozens of departments assisting his development and until recently had several long bouts in hospital which puts a huge pressure on the family to do things and function as a family should.

Little Haven’s have been an amazing support for the whole family and especially Axel and his brother and sister Elysia and Eden.

Little Havens provides specialist care and support for babies, children and young people living with complex or incurable conditions, from Essex and the surrounding boroughs. Little Havens offer care and support for each child or young person, and their whole family, in their homes and at our hospice in Rayleigh, Essex.

Elysia (14) will be doing the fire walk and Eden (11) will be partaking in a lego walk. We are raising money to give back to the charity that has supported the family so much.

I was very fortunate that when I became President of the Chartered Insurance Institute of Chelmsford and South Essex we have been able to have Little Havens as our chosen charity. Christopher Johnson has also been kind enough to continue with this charity through his presidential year which ends on the 1st May 2025 so this may be our last opportunity to support as a CII community.

Please give as much as you can for this amazing charity to keep doing what they do for families in need and come along to the whole day Chelmsford Takeover where there will be lots to do with the family.

https://www.chelmsfordforyou.co.uk/chelmsford-takeover

Thank you so much for your support

Caroline