My three-year-old son, Daniel, sang the following words just before he fell asleep the other night: ‘God is good, all the time. All the time, God is good.’ These were the words from a Don Moen worship song we sang in church earlier that day. I have been grappling with this truth – that God is good – since Daniel was only two months old and diagnosed with severe haemophilia A.
Unexpected, unnecessary and unfair
Daniel’s diagnosis came so unexpectedly and felt unnecessary and unfair, particularly as it is a life-long condition which could be passed on to the next generation. Since his first port-a-cath (a device which is implanted under the skin) became infected during the implant, his medical treatment has been a rollercoaster ride. We easily forget just how fragile we are, and good health cannot be taken for granted. I’m sure every one of you reading this has a story to share of personal pain or ill health, or that of a loved one. Some people experience supernatural healing, such as my sister who was miraculously cured of cancer without any intervention. Others, like Daniel, (at least for now) need to rely on medical treatment.
A rare genetic condition
Haemophilia is a rare genetic condition, affecting only 1 in about 10,000 people, where one of the proteins important for blood clotting is either partly or completely missing. People with haemophilia take longer than normal for bleeding to stop. They may have bleeding into joints and muscles without having had an injury, so treatment is aimed at reducing spontaneous bleeding. Daniel’s treatment involves intravenous infusions through his port-a-cath every other day. This allows him to lead an active lifestyle (as many energetic toddlers do!) without fear of severe bleeding.
Is God good?
Daniel singing the phrase ‘God is good’ really hit home. He will likely face many obstacles in the years to come, but already he can testify that God is good! I am doing the same and will continue to rejoice in the hope of the glory of God (Romans 5:2) as I know he is in control. I will run with endurance the race of faith (Hebrews 12:1) – as well as the physical race, the London Marathon 2024.
Running the race
On 21 April 2024 I will be running the London Marathon to raise funds for The Haemophilia Society. I want to raise awareness for a condition that has personally affected my family and to support a charity which strives to empower people living with bleeding disorders.
I would be incredibly grateful if you would support me in my journey by donating to The Haemophilia Society. It is going to be a challenge, as I have never run a full marathon before. After recently completing a half marathon, I was shocked to discover my running app estimated my VO2 max (which is a measure of your aerobic fitness level) to be that of a person 25 years above my actual age! Plenty of hard training miles still lie ahead for me, but I am going to give it my best shot. Please follow me on Instagram for regular updates on this journey.
The Haemophilia Society
The Haemophilia Society provides vital resources, educational materials and community events and has been instrumental in advocating for excellent care and effective, accessible treatment through engagement with the government and the National Health Service.
People with haemophilia have not always had access to safe or effective treatment. Unfortunately, In the 1970s and 1980s, several thousand people with haemophilia and other bleeding disorders were infected with HIV and hepatitis viruses after being treated with contaminated clotting factors (treatment produced from donated human blood). The Haemophilia Society played an important role in campaigning for a public inquiry into the infected blood scandal, as well as for psychological and financial support for those affected.
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