Freddie's Fund

In 2014, our best friends Laura and Jamie were given the heart-breaking news that their beautiful son Freddie (aged 5) was diagnosed with a rare degenerative muscle condition.  

My husband and I witnessed them grieve for the life that their boy deserved. It killed us to see it and we’ll never forget those first couple of years.

Their journey began in 2014 and still to this day their life is filled with multitudes of hospital visits, muscle biopsies, tests, medications, appointments, medical trials and general struggle. All throughout which Freddie has been the bravest boy imaginable!  He has a fantastic sense of humour and is extremely caring and sweet natured. Everyone loves Freddie. It’s impossible not to.  

Throughout it all Freddie’s parents have been his constant champion, searching all avenues for possible treatments in the hope that one day there might be a cure for his condition.  They are both so incredibly positive and resilient and create the most amazing family life for Freddie and his brothers. However, day to day life is awfully hard for Freddie and will unfortunately continue to get more difficult as his condition progresses. There are so many pieces of equipment that he will require both now, and in the future, just to give him the same freedom, independence and mobility as an average child.  Currently, due to Freddie’s reduced mobility he is unable to join in with some of the things that his younger brothers and friends all love and enjoy which is something we as friend’s desperately want to change.

When we all go out together as two Families, we have to always choose carefully where we can go. Will it be accessible? Will Freddie be able to do it? What if Freddie feels left out? And most of the times we find that Yes its not accessible. It’s really shocking to see how many places in this world there are that the physically challenged cannot access! It makes us angry – we see the world through Freddie’s eyes – he is like a nephew to us – and in turn we all feel the frustration with him.

Recently it’s become apparent that we need to get Freddie some new wheels. He has test driven a new wheelchair and we really want to help him get it. Its just over £20 000 but I’ve seen what it can do. It’s called a multi-terrain chair and the possibilities of where he can go are endless if he gets it. I watched it drive UP a kerb! And in that moment, I saw Freddie’s face light up. I remembered the countless times that we’ve had to travel a further 300 yards down the path to find a drop kerb just so that we could all cross the road with Freddie! I was blown away by this wheelchair’s capabilities and what’s even better is that it will be with him for life. The chair will adapt as he grows, and it can change as his needs change too. I told my best friend “we’re gonna get him that chair!’

We want to raise enough money so that Freddie can enjoy the beach near where he lives, go on school trips, walk with his dog Jess in the woods, and just be a normal kid doing normal things. His current wheelchair restricts his mobility and he can’t go on any rough terrain or uneven ground.  Initially, with any funds raised, we would love to be able to put it towards the all-terrain wheelchair and if we are lucky enough to meet our target then any surplus funds could go towards his ongoing appointments in America, or any of the other things I know he needs.  This wheelchair is expensive, but I hope that as a community we can raise enough money to get this life changing, ‘freedom giving’ piece of equipment for Freddie.