Peterborough teenager diagnosed with same condition which nearly killed her dad describes how her life has been turned upside down

Hannah (17) from Foster Road, Sugar Way, was later diagnosed with the condition as well and has been battling it ever since, even while completing her GCSEs.

In this heartfelt first person piece Hannah, who has raised money for a number of charities during her teenage years, describes how she has been physically and mentally affected by the condition and how she is now raising money for Cavernoma Alliance UK which has supported her and many other families.

This is Hannah’s story:

Cavernoma. Most people probably have no idea what it is. Well, so did I.

Rewind back to April 28, 2018, early hours of the morning. My dad was fast asleep, as were many of us, that was until my whole life got flipped upside down. I was fast asleep until I heard my mum screaming my dad’s name. Wondering what was going on I stumbled out of bed and walked into my parent’s bedroom.

As I opened the door the first thing I saw was my dad laying there on the floor, his body violently shaking. He was unconscious and unresponsive. I was in complete shock. I tried screaming “dad” to get him to respond but I knew it would be no help. My mum rang for an ambulance while trying to put dad in the recovery position while I stood there, frozen, terrified. I took a step closer to dad where I saw his eyes had rolled to the back of his head, the left side of his face dropped and strange noises coming from his mouth.

Within 25 minutes of my mum calling the ambulance the paramedics arrived. They did a few tests, and when my dad was re-gaining consciousness they rushed him to hospital. The next few hours went really slow until I received a call from my eldest brother saying he was coming to pick me, my nan and my boyfriend at the time up to take us to the hospital.

When we arrived mum met us at the entrance where she told us dad had secondary brain cancer and had only three months left to live. After hearing this I clung onto my mum, both of us in tears, and then walked off in disbelief. I sat in Costa at Peterborough City Hospital in complete shock. My whole world felt like it was collapsing. All I could do was cry until I could cry no more.

Five days went by when we found out some good, but bad news. What dad had was not secondary brain cancer, but it was multiple cavernous haemangiomas which had bled and caused him to suffer a haemorrhagic stroke. A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. The symptoms that cavernomas can cause vary in severity. Some are seizures, severe headaches, haemorrhagic strokes and neurological problems such as slurred speech.

We soon found out dad has the genetic version of cavernous haemangioma and there was a 50/50 chance me and my brothers could have this condition. My elder brothers Matthew (20) and Christopher (26) both wanted to have the genetics test as well as myself, but then they made the decision they no longer wanted it and I was left on my own.

I went to the genetics appointment. My parents, brothers and boyfriend at the time all came with me. Sitting in the seat next to the doctor, my mind racing with thoughts, trying to take in everything the doctor is saying to me. Then she asks: “would you like to have the blood test?” Without thinking ‘yes’ comes out of my mouth. For the next month all I could ask myself was: “was that the right decision?”

It felt like forever until I got my results, until one day they fell through my letterbox. That evening mum sat me down and told me I have the gene. This didn’t come as a shock– deep down I knew I had the gene.

I was referred to a neurologist at Peterborough City Hospital. In June 2019 I went to see Dr Baumer. He went through some health problems I have such as spontaneous fainting and migraines and asked the dreaded question: “do you want an MRI scan?” On June 26 I had the scan. I felt like I was suffocating with nerves.

A week after I came home from college where mum came into my room with a sheet of paper. She told me Dr Baumer had phoned and given her the results. She said it came back that I have multiple cavernous haemangiomas. At first I was fine with the news. At least I knew and I could live my life knowing I have this condition. But then the following day it started to hit me.

Ever since my life has not been the same. I was just 15 when this all started. Enjoying school, going out with my friends. But now I am a 17-year-old girl not knowing what her future has to hold.

The past year and a half has been the worst for me and my family, not knowing whether I was going to be able to take my GCSE exams. But I gutted through them and came out with 10 GCSEs grade C or above. As soon as school ended I lost a lot of my friends who told me I’m too depressed and no fun anymore. That was a very difficult time as suddenly I felt so alone. Nobody knew anything about this condition or anyone else with it.

Now being 17 I don’t feel so alone and that’s all thanks to Cavernoma Alliance UK which supports families who are affected by cavernomas with their wonderful counsellor and by hosting residentials throughout the year. My family went on our first residential this year where I met some lovely people and I soon realised I am not alone.

Hannah is now trying to raise £3,000 by next August for Cavernoma Alliance UK.

She said: “I don’t know what I would do without this amazing charity. Unfortunately, CaverFamilies only have funding until June 2020.

“As a result I am pleading to any companies, organisations or individuals for sponsorship or donations to keep it running - www.gofundme.com/f/CaverFamilies-Summer-Residential-2020.”