My name is Matt – my son Ollie, now 8, and my wife Emma have Cavernomas.
Ollie’s Cavernoma is in his brainstem, while Emma has numerous cavernomas in her brain – the biggest is massive, and is in her left temporal lobe. Emma was diagnosed in 2008 after having seizures our of the blue, just after our the birth of our first child. Ollie was diagnosed in 2017 when he was 3 years old. We were on a family holiday when Ollie’s right leg became weak and he was having trouble chewing food. Things deteriorated from there on.
Emma has recently had a Vagus Nerve Stimulation (VNS) implant fitted (Feb 2022) to try to prevent her seizures. She now needs physio and carers for the mornings. Ollie has had numerous treatments, including two major brain surgeries (2017 and 2019), with the last one being the biggest. He has to have botox injections in his leg and hands and weekly physio and Occupational Therapy appointments. He will also have carers in the mornings to help.
As I write this, Emma is currently still in hospital recovering – we had a few set backs in her recovery but she is currently slowly getting better and we are waiting for the care package to be put in place.
Ollies recovery has obviously been the longer road, but he’s a resilient little boy. He’s currently learning to walk again, whilst getting back into schooling which has been stop/start since first going. He’s still awaiting around 3 more surgeries, but we are taking our time with them – specially with the delays that Covid 19 has created.
Day to day life for us has flipped upside down. Things completely changed when Ollie had a haemorrhagic stroke in 2017. It then happened again – but worse – in 2019. Now with Emma’s health having deteriorated, we are trying to find another way of getting through. It has been extremely hard on the family as a whole; trying to adapt, learning to live our new normal, and then COVID hit – right in middle of Ollie’s recovery which really did affect us. We lost complete support for around 6 months before it slowly started again, although it’s still not up to full schedule. We hopefully will start to get there after the pandemic.
As I mentioned, daily life has been the biggest challenge in general; learning to live again and realising that the world isn’t set up for disabled people, the realisation that what would be a minor inconvenience to a fully able bodied person can be a major road block for a disabled person. We’ve also had to deal with peoples’ reactions, the way people treat disabled people is often disheartening. We as parents try to shield Ollie away from that, but we also struggle because of Emma’s invisible condition, even during every day interactions like at the bank, post office, and shops.
This emotional and mental challenges for the family has broken us numerous times, I couldn’t really tell you how we coped throughout since 2017, only that we have had each other and stuck together. We always just say: “I don’t know how we coped but we just managed to get through”. I would say that Emma has been the one to get us to focus on one thing at a time, making sure we have things to look forward to, and just trying to move forward and focus on that.
As a father and a husband to people with cavernomas, I would say just be patient with them. Listen and learn. Even when I don’t understand certain things, I just try my best to be there for them. It’s a challenging time for everyone in the family, but them most of all.
CAUK have been brilliant since we first got in contact, they invited us to the Cavernoma ‘CaverFamilies’ Residential. I remember our first ever one and the parents welcomed us with open arms and they really understand and are sympathetic to what you are going through.
The dads for me have been brilliant; the banter and the friendship has been a little life line for me personally. CAUK have also put us in touch with professionals and offered advice on more times I can count. The counselling they gave given us, I can only say has saved me. I find it hard to talk about things but they have found a way to help.
No matter how hard it can be at times, you have someone like the CAUK there for you, the people that are part of it are special. I’ve learnt that there are good people that want to help you, and I’ve learnt to be closer to my loved ones, and to be patient to their needs.