Story
Meet Freddie...
...a cheeky, fun loving, mischievous 11 year old boy. He smiles constantly and has a wicked sense of humour. He loves nothing more than playing with a football, listening to music and driving his remote control car.
But sadly behind the mischief and smiles is a little boy who fights huge battles. 
Since day 1 life hasn't been easy for Freddie. I've lost count of the number of operations he's had, how many times I've rushed him to hospital and his list of health conditions grows scarily fast.
Freddie has recently been diagnosed with DDX6 syndrome, a rare condition that little is known about, that leaves him with so many complex health and learning issues. His brain doesn't let him function at a 11 year old level leaving him with severe learning difficulties, unable to walk and unable to talk. He has scoliosis, kyphosis and sleep apnoea needing overnight cpap. He has an ileostomy, a gastrostomy and a jejenostomy to help deal with the failure of his gut.
The past few years have been particularly unkind to Freddie, he went through a really rough time and was very unwell. He has spent long periods of time in hospital. Cutting a long and traumatic story short he ended up losing his large bowel, having a supra pubic catheter inserted and now needs to be fed TPN(total parenteral nutrition) via a hickman line in his chest...a form of feeding that totally bypasses the gut and instead feeds into a tube directly into the heart. You can read more about Freddie's story here. https://www.chsw.org.uk/story/meet-freddie
But despite everything Freddie has been through in his short life and the battles he still has to face he continues to absolute love life. One of his favourite things to do is to be in his walking frame, just the sight of it makes his eyes light up. His frame gives him a sense of freedom, a chance to escape his wheelchair and get a glimpse at what life is like to be able to move around more freely. His little legs love walking around exploring and he especially loves kicking a football.
Although Freddie's had it tough himself, for the past few years he has taken on a yearly challenge of doing a sponsored walk to help others. This year Freddie will be taking part in a walking challenge by doing 30 days of walking in his frame to raise money for The Children's Hospice South West. This is a charity very close to our hearts. Freddie has been visiting Little Harbour Children's Hospice in St Austell for a few years now and absolutely loves his visits there. There were times over the past few years when Freddie was so unwell I was so worried where his journey in life was going. We have had to fill out paperwork to detail our wishes for Freddie if the worst should happen. But to know we have Little Harbour Children's Hospice by our side has helped us so much to deal with our feelings and made us feel reassured that whatever should happen there is always a place for us.
There are so many children like Freddie who don't get a real shot at childhood. Children with chronic, complex health issues. They are in and out of hospital, they are in pain, they are hooked up to feeding tubes and breathing machines, they are having seizures...they aren't getting the carefree childhood all children deserve. They don't get to run around and play. They spend so much of their lives unwell.
Freddie currently spends 12 hours a day hooked up to a TPN feeding pump feeding into his heart. He needs constant 24/7 care and at any minute he could become very unwell. Life can be incredibly tough and incredibly cruel to children like Freddie. This is why the children's hospice is so important. It's a special, magical little place for these children and their families.They provide specialist palliative care, respite for the whole family, a sibling service for brothers and sisters, emergency support, end of life care and a bereavement service for as long as is needed.
Freddie will begin his walk on Wednesday 1st June - his 12th Birthday! and will do 30 days of walking in total, but it may not be consecutive days. He sadly lives a life where his healthy can very quickly deteriorate and can become very unwell very quickly. But I can guarantee if he's well he will want his shoes on and will give it his best shot!
You can follow Freddie's walking progress over on his facebook page - https://www.facebook.com/SwanFreddie
Any donations will be so appreciated. The hospice relies almost entirely on voluntary contributions and right now when the UK is going through such an awful pandemic so many fundraisers have been cancelled or postponed. It is vital that they still maintain the levels of fundraising income to ensure that they can continue to be there for children and families, both now and into the future.