Fraser is my son, aged 6, who was diagnosed with multiple cavernomas of the cerebellum when he was just two years old. He had been a premature baby and was having difficulties with walking. It took a long time for a definitive diagnosis to be made, as other neurological conditions were also suspected, including AVMs and brain tumours. Fraser’s cavernomas were bleeding, and increasing in size, three of the five had combined to make a giant cavernoma that was considered life-threatening.
Six months ago, following the advice from several neurosurgeons, we decided that surgery was the only option if our child was to have a chance of living a normal life. Fraser has recovered well, but he still has two cavernomas. He has also tested positive for CCM1, a genetic marker for hereditary cavernomas which means he may well continue to grow more cavernomas throughout his life. Happily, it is now possible to eradicate the gene, which is a great relief for parents who are worried not only about passing it on to their children, but also about how the gene will affect their own children’s decisions about having families in the future.
As a family we have learned to appreciate each and every day. CaverFamilies, run by CAUK, allows us to meet and interact with other families like ours. CaverFamilies have events (days/weekends), enabling children like Fraser and families like ours to support, and be supported by, others who understand his condition. The children really get on together, which helps them to feel less isolated.
Fraser is well educated about his condition and is learning to deal with it psychologically as well as physically. He gave a talk at his school, taking his brain scans to show the class what cavernomas look like and to explain what they are and how they can affect lives.
Fraser doesn’t let his cavernomas stop him from living a full life. He keeps active and really enjoys sport. Watch out for him in the Paralympics when he’s older! As Fraser says, “I will never be cured, but I will always be awesome”.