19/02/2026
Alex is kind-hearted, funny, and loved by everyone who knows him. I’ve previously shared our story in the media to help raise awareness, and four years ago I created this page to continue that mission and document Alex’s journey with Neurofibromatosis Type 2 (NF2), a rare genetic condition. Not updated this in a while so here we go.
Alex is the first person in our family to be diagnosed — a de novo case. NF2 causes tumours to develop on the brain, spine, and nerves. These tumours cannot be removed permanently or shrunk; treatment focuses on slowing their growth through chemotherapy. Surgery is considered only as a last resort, as the tumours often return. At present, there is no cure and no remission.
His first seizure was at six. After that, he had one each year until 2019. Doctors initially thought it was fever-induced epilepsy, then found a brain scar. In December 2019, he was diagnosed with NF2. In June 2020, Alex began Avastin chemotherapy at Southampton’s Piam Brown Ward. Only four UK hospitals treat NF2, with Oxford being our nearest. As the youngest NF2 patient in the UK to start Avastin, approval had to be sought. We travelled from Portsmouth to Southampton for a year — difficult without driving, relying on patient transport - being around other children going through similar things helped us feel less alone. Alex loved the play area. We remember seeing Charlotte and her daughter, Sophie there, though at the time we didn’t know her journey.
By 2021, complications began. His port blocked, became infected, was revised, blocked again, and eventually removed. His veins were deteriorating, so he depended on it. He later needed another fitted. Amid everything, we tried to make memories — trips to London for the Harry Potter Studio Tour and Legoland. A YouTube music creator even visited to support Alex and raise awareness.
In 2022, things became even harder. In May, Alex started morphine for pain relief. In June, we made a 12-hour round trip to Oxford to meet his team — exhausting but worth it. In July, after he was sick one morning and nurses couldn’t get blood return from his port, a chest scan showed the implant had moved upward. It led to his fourth surgery in a short period. That October, we were back in Oxford again for eye tests, audiology, and psychology appointments.
In 2023 The reality of lifelong chemotherapy felt overwhelming — often it’s not the chemo itself but the constant MRIs, emails, and appointments that wear you down. In March, his vision deteriorated beyond help from glasses. In May, a school lesson about cancer upset him — on the outside he looks like any other child, but some days are incredibly heavy. Then in November, Alex’s mum passed away. Around the same time, his port failed again and he needed a cannula for his final treatment of the year.
In 2024, I met my now wife, Bree. Alex’s vision continued to decline, and he had already stopped wearing glasses as they made things worse. Alex got his certificate visual impairment.Earlier in the year he began saying his hearing aids weren’t helping; in January he was diagnosed with moderate hearing loss in one ear, and by June it had progressed to profound loss, meaning hearing aids could no longer assist that side. He is now essentially half deaf and losing his sight. In August, I passed my driving test — no more motorbikes — and my dad gave me a 1996 Corsa, which made hospital travel easier, even if I had to drive with the sunroof open to fit. By November we had our current car, Hannah the Honda. In December, we returned South(but somewhere pricey) to be closer to his hospital team and family support.
In 2025, we shared our Oxford hospital journey on TikTok so people could see what treatment really looks like ( https://vm.tiktok.com/ZNRPujfNF/ ) By July, after five failed blood tests over just a few days, doctors were discussing yet another surgery to fit a new port near his heart. He cried and said, “Dad, I just can’t do this anymore. It’s hurting too much.” He’s on morphine most days now — it takes the edge off, but it doesn’t remove the pain. Sometimes we wish it were cancer — at least then there might be remission. With NF2, there isn’t. It can feel soul-destroying. He’s just a child. My oldest son. Kind. Gentle. February came around and Theodore-Kyle is born! Been a busy year with appointments and trying to get a simple adaptation(hand rail for bathroom) done, but it was refused by landlord - on the other hand, thankfully nothing has declined for Alex for a while!
2026 is here(well February already!) and we’ve finally got a council place in Havant - hopefully a near-forever-home - now Alex can have any adaptations he needs, nearer family, much cheaper rent and nicer area imo. Alex had chemo today and it went well. 😁
Peepaw Shaun
