3 March 2019
Isn’t it time that we started to look after one another?
This week I was honoured to meet with a family who I have known for some time. Lucy came to share her son and daughter’s story. You may have seen me write about them before, or heard me speak of the family.
Lucy’s son Ollie was diagnosed with the incredibly rare Batten Disease. The disease prevents the enzyme that clears waste from your brain, meaning that children with it have a lifespan of up to 12 years old.
Ollie was a wonderfully cheery little boy with no signs of any illness until one day, out of the blue, he had the seizure that led to the unthinkable diagnosis of this extraordinarily rare condition. Lucy welcomed a fourth child, Amelia, a little girl to add to her three sons. After Ollie’s diagnosis, the three other children were tested. Shatteringly, Amelia was also diagnosed with Batten disease.
It’s impossible to comprehend or imagine the devastating impact of receiving the diagnosis for one child, never mind for two. Yet there was a glimmer of hope. Whilst not a cure, Ollie and Amelia were granted enzyme therapy to give them the gift of more time. Every two weeks the family travel to Great Ormond Street to receive the treatment.
Thanks to that treatment, Amelia is thriving, surpassing all expectations.
However, the treatment is expensive and the family have just found out that there will no longer be an option for the family. A change to the law by the government and a recent ruling from NICE means that Ollie and Amelia’s treatment is effectively deemed too expensive.
The measure of society
This family, who have experienced far more than anyone should ever have to, now face the reality of watching their two wonderful children deteriorating, knowing that there is a treatment available but that cost is stopping their children receiving it.
I spoke with Lucy on Friday. Hearing their story first hand in the quiet of my studio is something I am still struggling to reconcile a few days later. How can it be right that the government give up on these children because they cost to much to keep alive?
In my mind, the measure of society is in how we treat those in the greatest need. When I look around the streets of Manchester and see the flood of homeless people sleeping rough, struggling to get by, I have a sickening feeling knowing I have just spent the past three weeks in the lap of luxury on a desert island.
There is so much imbalance in the world right now and, as the divides in society are not shrinking, they are growing – with Brexit and beyond – it seems that we’re losing that incredible British spirit of being able to pull together to drive change. We are distracted by superficial arguments that we can’t affect the outcome of anyway.
Whilst warnings of climate change ring across the world, there are leaders driving the flywheel of industry, placing profit for their shareholders and pollution of our planet higher on their agenda than the health and wellbeing of hundreds of millions of people. Truculent characters like Trump are pushing hard in the wrong direction, frivolously dismissing climate change and joking that it is good thing when it snows, yet conveniently failing to mention it when the fires devoured the bush around Los Angeles.
Equally, governments are spending billions designing and creating weapons, millions on Brexit. Think about the infamous contract with the ferry company that had no ferries which has left the government having to fork out £33 million! That money could have paid for the treatment to keep these children alive, and many others, for many years to come.
When did we get our priorities so mixed up?
A taxing issue
It is incredibly frustrating when you consider just how much tax we all pay into the system. In my mind, we pay our tax so that the government can protect us and those around us. It’s the vital money that ensures our country keeps going and keeps us going. It’s the money there specifically to protect those who need it the most – especially when times get tough. Yet, there is money seemingly being wasted left, right and centre and there are still big businesses who are not paying their way. And, whilst the owners of these giant corporations sip champagne and congratulate themselves on how well they are doing, children like Ollie and Amelia are denied the treatment that would give them more time to make a few more memories with their families.
The cost of the treatment for Ollie and Amelia is extraordinary, and to try to raise enough money for the annual cost would be an almost insurmountable task. Instead, the family are fundraising to be able to fight the law. To drive change for all families affected by rare diseases like Batten Disease.
Time to help
The family’s GoFundMe page will be live soon and I will update this blog with the link as soon as it is. I am kickstarting it with a £10,000 donation to help Ollie and Amelia in their hopes of taking on the government to get the law reversed.
Any help you can give promoting their predicament and supporting them on their journey will be invaluable.
I will also include a link to the conversation I had with Lucy on Monday as I am publishing it on my podcast.
It’s worth a listen. I was reduced to tears.
I appreciate we all have many differences of opinions over politics, Brexit, the economy and life in general, but isn’t it about time we all pulled together?
Update: here is the link to help Ollie and Amelia’s cause.