Meet my mum, Bernadette Tapper. And my Dad, Mark Tapper.

My Mum is a mother of four who escaped an abusive relationship in 1990 by being saved by my dad (non-biological but will always be my dad). My mum, my two older sisters and I were taken away from the abusive house we lived in and were very much saved by my personal hero and we were promised a new life where we would all be happy. In 1994 my mum was pregnant with my little sister but wasn’t very well and went to the doctors who genuinely told her that because she let her guard down after the abusive relationship her immune system reacted and thus she had contracted non-Hodgkin’s lymphoma – fantastic…Cancer.

Fast forward a few years and my mum is in remission, thank the Gods, but that’s not enough. In 1998 my mum was diagnosed as having transverse myelitis: “Transverse myelitis is a neurological condition in which the spinal cord is inflamed. The inflammation damages nerve fibers, and causes them to lose their myelin coating leading to decreased electrical conductivity in the central nervous system. Transverse implies that the inflammation extends across the entire width of the spinal cord” Over time my mum’s spinal problem meant that some of her spinal nerves were exposed and this means that she was in the most pain I could imagine and things started to degrade very quickly for her. Walking was incredibly difficult and painful; she has needed a walking stick for almost all of the life I can remember and there are other issues that for the sake of dignity I will not write down.

Years pass and me and my sisters all go to school, children are cruel and make fun of things they don’t understand. I can’t speak for my sisters but I know that on more than one occasion I was bullied and laughed at because my mum was disabled and had cancer; very nice. At this point my dad is still working and my mum obviously can’t so life isn’t too bad; one working parent and another on disability benefits. But inevitably my mum’s pain starts getting worse and she then had to start having very painful injections into her spine and have the exposed nerve endings burnt to try and stop the pain. It did for a small while but the pain always came back and always got worse.

In 2009 my Dad had to retire to become my mum’s full time carer. The smiles started to fade, the happiness stopped and my family became a spiralling pit of depression. We went from having a little bit of money to next to no money. I’m sure you know what someone on disability gets and what their full time carer gets; pittance. Now I try to send them money when I can and I try to buy them nice food but as is the case post 2008 – keeping a job is hard especially when you’re in Sales. I hate seeing that my mum and dad can’t afford to eat properly and I hate it even more when I can’t help them. Soon the debts start piling up and as is often the case; things start to get out of control financially.

A couple years later and the pain is too much; time for my mum to lose weight. And by god doesn’t she just? Over 16 stone! But the pain is still there and it’s still getting worse.

Fast forward a few more years and I start researching spinal conditions and I looked up transverse myelitis and realised that the vast majority of cases of TM actually recover within two years, 66% of which have fair recovery or better and I started to believe that my mum is suffering with something other than TM. She begins the diagnostic process all over again and on Christmas Eve 2014 I get a call from my mum; turns out she has Secondary Progressive MS., but still tries to force a smile for everyone else.

Now I’m not a doctor and I also think that biology is voodoo (coz I don’t get it) but when I’ve looked up SPMS it almost always says that this is a progression from Relapse and Remittance MS (something that can be managed or at least slowed). I got so angry knowing that my mum had been misdiagnosed for years and upset knowing that her quality of life could have been improved if the MS was managed. Over the next two years we see a substantial change in my mum’s attitude and demeanour and no child, not matter how old we are, should listen to their still very young mother tell them that they want to die; that they wish they had the money to go to one of these countries and try to have an assisted suicide.

Enough is enough. We argued a lot, my mum hates the idea of people claiming against the NHS but I hate the fact that her life has been affected so much by this crap. I filed a medial misdiagnosis claim. Money can’t change my mum’s illness, money won’t make her walk properly again, money won’t take away the pain but you know what? A bit of money might bring the smile back on my mum and dad’s faces and stop the phone calls and the worried looks.

We had a company called yourlegalfriend who took the claim and said they were very confident that we had a case. He started telling my mum figures of around £80,000 and above which would solve a lot of my mum’s problems and would fulfil some of her dreams.

But today 07/09/2017, we received a letter stating that there’s no case for medical negligence. No case for misdiagnosis. The medical specialist states that my mum received no injury from misdiagnosis and therefore there’s nothing to claim for. It appears that they don’t care about the possible preventative measures that could have been put in place and they don’t care about the quality of life. I’ve since called a couple of other legal companies and they have all told me they won’t touch it. The deadline to claim is this December and it’s already been rejected once.

And so I’m writing this; telling a heavily censored story that very few people know much to the embarrassment of my family to ask for help. My family are all very hard headed and they don’t believe in asking for help but it’s come to that time.

I want to see my mum and dad smile again and actually mean it. I want to give my parents a little bit of happiness before they get too old to enjoy themselves. We live in a beautiful world but you have to have money to be able to explore it? How messed up is that?! I truly believe that my mum and dad deserve the world and I want to give them just a little bit of it.

When the solicitor told us the figure of around £80,000 we couldn’t believe it and my mum had a little wish list. I would never expect to get close to the figure but she hoped to;

Renew their vows with and at the same time have a honeymoon (22 years after they got married!!) and her dream holiday is a cruise.

She hoped she could buy a Camper Van so they could just up and go wherever they wanted without having to worry about paying for a hotel.

They hoped to clear their debts, because they are only on benefits their debts had piled up and they finally got an IVA. They have a few years left and I’m unsure on the value but at the moment it’s taking over £150 of their monthly money and I’m really hoping we can try and reduce this.

After losing 16 Stone there are obvious skin issues and after having gone through all that stress and all that work my mum looks at me now and hates how she looks. She hoped to get some Nip Tuck Surgery to give her a little more self-esteem.

And finally, she hoped for a specialist bed and mattress, we all know how much sleep means to us and I know that there must be a bed out there that can at least ease the pain a tiny bit.

If we can make any of these dreams a reality I know it will bring a smile to their faces and mine and I truly hope you can help.