Supporter story – Father is inspired to run the London Marathon after his son is diagnosed with haemophilia A
Hello I am Sam and this is our story about our youngest son Jaxon and his recent diagnosis of moderate Haemophilia A.
I have been given a place in the 2019 London marathon running on behalf of the fantastic Haemophilia Society. My youngest son Jaxon was diagnosed with haemophilia which is a rare bleeding disorder, at 11 months old, after a small cut to his mouth wouldn’t stop bleeding. He was bleeding for 4 days from this small cut and kept being sent home from hospital. His mum Kerry and I were so worried at this point and at our wits end. We pleaded with the hospital to keep him in and do some tests.
They eventuality agreed and he was put under general anesthetic the next day to have the cut stitched up. They also did a wide set of blood tests including testing his clotting factors. He had lost so much blood during the 4 days his iron count was severely low, he was told to be on iron for at least the next 4 months.
We were sent home waiting for the rest of the results. Later that day we had a call from the anesthetist to say he suspected he had haemophilia as his clotting factor 8 levels were at 2% which is really low and most people are at least over 50%. He told us he had booked an appointment at the nearest haemophilia centre to us which is in Canterbury for a few days time but if he fell or had an head injury we had to take him to hospital straight away. This was so worrying.
We both hadn’t heard of haemophilia before and felt really alone and scared. That night, he started bleeding from the stitch again. We called the hospital and had to take him straight in where he had a cannula put straight into his ankle as that was the only place they could find a vein. This was so frightening as he was obviously very distressed. He was given his factors by IV and stayed in over night.
On reflection we had signs when he was only a few months old. He bruises very easily and always has. Kerry took him to the GP when he was 5 months old with bruises on his chest which had lumps under them. But was told it was just where some one had picked him up to hard and it was ok.
It takes all of mine and my wife’s best efforts to protect him from injuring himself which is a big effort when it comes to Jaxon because he is such a live wire and an active boy. He only has to have a small trip and he will have the biggest bruise appear. He is such a good little boy and has had to have a lot of blood tests and check ups at Canterbury & William Harvey hospital in Ashford, where they do a great job in looking after him when he has to have his injections.
The Haemophilla Society helps so many people and it’s the only UK-wide charity for all those affected by a genetic bleeding disorder.
For almost 70 years it has campaigned for better treatment, been a source of information and support, and raised the awareness of bleeding disorders. As I said We didn’t really understand all the information that was being thrown our way about this rare bleeding disorder at first and how we have to manage it and care for him.
The Haemophilia Society do a great job in getting information to you and connecting families and individuals who have haemophilia and share an understanding of what living with haemophilla is like and if I can raise even a little awareness of this disorder (which a 7 months ago I knew nothing about) and raise some money for this great charity then I feel running the marathon is the least I can do!!
So any support you can give would be much appreciated.
If you would like to support Sam by donating, you can do so here https://uk.virginmoneygiving.com/SamHodge1