What it is like to be the parent of a VHL sufferer.
A personal viewpoint by Paul Bryant – Father to VHL Warrior, Francesca Goddard.
When Francesca asked me if I could undertake this, I immediately said yes and have been deliberating as to how to write it ever since. Francesca has VHL and has to live with relentless ongoing uncertainty on a daily basis – I don’t.
As a parent, when your child is unwell, you wish you could suffer for them and ease their distress and pain – being the parent of a VHL sufferer is no different. Before Francesca was diagnosed at the age of sixteen, I had never heard of VHL, it was as the result of a brain tumour that her medical team wanted to test for VHL, and when she was found to be carrying the gene, it was a shock, the full impact of which took some time to fully comprehend.
Initially you worry about the future and very practical things: more tumours; further major surgery; the complexity of the operations and the accompanying threat to your child’s life.
This does become consuming, but with time and understanding you begin to realise that albeit incurable at the moment, it is manageable and life will go on.
Every operation is major and the time waiting to hear that Francesca was in recovery, and all had gone well, were some of the longest hours I have spent in my life; this doesn’t change, and I don’t suppose it ever will do. The medical teams providing VHL treatment are outstanding and Francesca has been so well looked after. This helps, and is very reassuring when another operation is looming to think of those highly skilled, magnificent medics looking after your child.
I suppose the biggest thing really is the relentless uncertainty I referred to earlier. As a parent you feel this, but you know it is incomparable to what your offspring is going through. My way of dealing with this is to be as supportive and positive as possible; I always look for the bright side. Sometimes it’s difficult to see the positive, but the last thing your little warrior needs is you in bits, or negativity. There is always light and that’s what you need to focus on and radiate that feeling.
There’s something else too you feel as well: pride – immense pride. I don’t see Francesca as a VIL sufferer, I see her as a VHL warrior, fighting the disease and helping others to fight it as well. Sure she’s still my little girl, but she has endured everything VHL has thrown at her; she has become a woman, a mother and someone I’m just so proud to call my daughter.
