We started this journey over 10 years ago when our 2 ½ year old became seriously ill. It was a very scary experience being blue lighted to a London hospital and being told it was life threatening at the time. We spent 11 days in intensive care and then as he made his recovery there followed many trips to physio to walk again as well as numerous other specialist.
At the time, we had very little knowledge and were wholly reliant on the neurosurgical team at the children’s hospital. It was traumatic and lonely coming to terms with a condition that was so rare. It became clear that Cavernomas are so different depending on their location, size and bleed rates, etc.
Thankfully we found CAUK shortly afterwards and got information and support which was life changing. We have been lucky enough to meet some wonderful people in similar situations and get some perspective of the condition and dealing with what the future may bring. We attend many of the events to get more information, keep abreast of who the specialists are and what is being discovered but most importantly to meet people like you who have found this great organisation for support.
We are still on the journey but find that we have far more information and contact with professionals that are knowledgeable and that gives us hope that others with this condition will not have to be as frightened or alone as we felt when it first presented. Thank you to all at CAUK.