Sweet Baby Vance
As a father, all you want to do is provide for and protect your family. There is a welcome ignorance to the dangers in life, the fact that children are not immune from disease and death. I relive daily, that walk to the meeting room in the children’s hospital, the news that our son has an incurable condition called Leukodystrophy and that it would inevitably take his life.
That is the day I failed to protect my family, to keep my boy safe. I’m now realistic in the fact that this is not my fault, my wife and I didn’t realise we were carriers of this genetic condition and had a 1 in 4 chance to pass this on.
I’ve since learnt Vance’s condition was called Vanishing White Matter Disease (VWM) and it’s incredibly rare…..what were the chances of this happening to us?
My head knows these things, but my heart is broken and my arms are empty.
Vance passed away 21st of January 2018, 5 weeks after his diagnosis at 10 months of age.
It was a rapid decline where he lost his ability to stand, then sit, hold his head upright, hug his mummy back.
His last weeks were filled with seizures, spasms, motor decline while his mind remained trapped in a body that failed him. No parent should have to sit with their child waiting for them to take their inevitable last breath. Losing a child not only changes you, the trauma of a disease like this runs deep and I’m hopeful those around us will never really have to understand it.
Vance was a beautiful gentle boy, he loved music, animals and watching the leaves of our maple tree delicately blow in the breeze.
Vance, Chloe, no child with VWM should have to suffer like this, the families of these little angles endure pain for the rest of their lives too. My greatest hope for the future is that with help no family should have to go through this experience, let’s work together to learn more about the disease and stop it in its tracks.
I’ll never get to meet the man my son was to become but I know I will always be proud of him, he was a perfect little boy and will always be in our hearts.
Written by Vance’s dad.
#September is #Leukodystrophy #Awareness #Month…pass it on..#findacureforvwm
