My name is Jo Ward, I was diagnosed in Sept 1999, aged 29. I still remember the day as clear as it was yesterday.
No-one was sure I was going to make those millennium celebrations!
Up until that point, I had a few episodes of losing my balance and my hearing had deteriorated a little by the time I went to the doctors and MRi scans revealed bilateral vestibular schwannomas. Surgery was scheduled for 5 days time when they removed the right sided tumour which left me deaf on that side with facial palsy. I had severe dry eye problems which resulted in an extra hospital stay.
The left side remained stable and I learnt sign language and got life back together. Any remaining hearing on the left side lasted only a few years until 2005.
My first born arrived in 2007, and the doctors decided that a debulk of the left VS would be a good idea, so in 2008, life got put on hold once again for a few months while they did that.
My 2nd son came along in 2011 and after that I decided to have facial reconstruction surgery to sort out the facial palsy and it worked out very well, I was very pleased with the results.
2013, I amazed myself by learning to Ski, its probably, besides the boys, my greatest achievement. Although the left VS remained stable it was growing very very slowly but not enough to worry about, I tried a cochlear implant in 2015, but it didn’t work for me, so they took it out again and I remained deaf.
Scans in 2017 revealed it was probably time again to do something about the left VS so I had gamma knife on it to try halt the growth, at the same time I was told I have a 1.5cm frontal lobe meningioma so given the option it was treated with gamma at the same time.
Presently, the left VS and meningioma are stable but last MRI I was told I have a 1.9cm parafalcine meningioma, but there are no plans to do anything yet just watch and wait. I have a few spinal tumours that are stable, one is particularly big but not causing problems, the others have remained stable since diagnosis. I have cataracts in both eyes.
As a family we love to travel and we have a caravan at the seaside which we go to as much as we can. And all the boys love their football.
My second son Oscar was diagnosed around 2016, he has a juvenile cataract in his left eye and a very low level hearing loss. He is our NF2 warrior and born a fighter.
MRi scans show he has bilateral vestibular schwannomas and a frontal lobe meningioma. He has 4 spinal tumours, one of which is causing mobility problems in his left leg where his peroneal nerve does not work sufficiently well causing foot drop, club foot and muscle atrophy. He tries to keep as active as possible though and plays football competitively for a local team which hes really proud of and his favourite subject at school is PE.
We are under a great consultancy team for this but there is going to come a time in the not-too-distant future where he will need surgery to correct his foot problems.
His bilateral tumours are also causing some concerns and may need intervention sooner rather than later. Oscar would love to appear on BBC Children in Need to raise more awareness. He loves all things Lego, Star Wars, Xbox and Minecraft.
Despite it all, we are a team, we raise awareness of NF2 issues and are actively part of the NF2 BioSolutions UK charity team, where I am Chief Operations Officer, raising funds and awareness both locally and nationally and we will fight passionately until we get a cure. My husband Pete and our eldest Son Dylan help us with raising awareness & funds whenever they can and are right beside us fighting NF2.