Written by Dena, Carys' Mum
Carys is 15 years old and is the only one in our family to have NF2.
At 9 years of age she was diagnosed with a brain tumour after having multiple seizures. She was lucky that the surgeon quickly operated and was able to remove it all. The recovery from this surgery was very slow. It took her a full year to be able to have enough energy to attend school full time.
The following year she was genetically tested for NF2 after discovering a second tumour growing off her spine. At this stage we really had no idea what NF2 was as we had never heard of anyone ever having it, nor was it in our family.
When the tests came back positive we were absolutely devastated, our world felt like it had turned upside down. We could not believe this was happening to our beautiful girl.
We kept saying to ourselves why is our sweet little Carys being burdened with this awful genetic disease? Why her? What has she ever done to deserve this? All of these questions just kept going around in our heads. We came to the realisation there is no answer to these questions and we just must be loving, supportive and strong for her."
When she asks similar questions, we tell her she is the extra special one and only children brave and strong like her can deal with this. She loves knowing she is an NF hero.
After every MRI scan (where she must stay completely still for up to 90 minutes, which is traumatic in itself) we hold our breath that nothing new has appeared.
Her most recent scan has shown one tumour growing at the top of her spine (which is currently causing her lots of nerve pain) and two more off her lower spine. She also has the hallmark NF2 acoustic neuroma tumour in her ear.
The doctors say all we can do now is keep scanning and watch them and hope they don’t cause too much pain.
When the whole of the country was in lock down in 2021 due to Covid, Carys at 14 years of age was suffering with terrible headaches. Her surgeon did every test possible, but they were inconclusive as to whether she had a bone infection in her skull or not. We had to make one of the toughest decisions do we agree to operate to remove the front of her skull in hope of finding the cause or do we mask the problem with medication.
We made the right decision to operate. Her surgeon was shocked to find she had a tumour growing in the lining of her brain and two tumours growing in her skull bone (which was almost unheard of for these types of tumours to grow there). After surgery, Carys waited one month with no skull bone before going back under the knife to have a plate put in.
Carys said the surgery part she could deal with, but having to have the whole front of her head shaved off twice was what really made this so difficult and upsetting for her. What 14 year old girl should have to go through this?
Carys is currently doing amazingly well. She couldn’t wait to start back at school to be with all her friends. She is now doing all the activities she loves like dancing, netball and drama. She has even signed up for the Duke of Edinburgh Award and is helping her dance school with a junior class. We are so proud of Carys and cannot believe how strong and positive she is after everything she has been through.
It is important that she enjoys this time as we just don’t know what the future holds for her. "