The Rose Tinted mum

With one day to go until this years Transplant Games, I thought I would share the extract I wrote for Billy’s JustGiving page.

This piece has been written from a child’s point of view and highlights the constant struggles an individual has with a life threatening illness.

It’s a little different, but well worth a read.

Enjoy x

Hi everyone I’m Billy Twitchen and I’m 6 years old.

I live on the South Coast with my mum Laura, my dad Alec, and my furry brother Scrumpy.

Also, Nana Jack lives near and visits us most days for an afternoon dog walk and a quick cuppa before dinner.

My favourite dinner is sausages, jacket potato and beans with a side order of apple juice and jelly for pudding.

I go to school Monday to Friday and love meeting up with my friends and making my brain bigger.

My favourite subject is forest school as I love to get dirty.

On the weekends I like going to the Library with Nana, meeting up with friends and family and going to steam rallies and monster truck shows.

Ah, I just remembered, I missed a few bits out, I’m going to start again if that’s ok?

Hi everyone I’m Billy Twitchen and I’m 6 years old.

I have a rare liver condition called Biliary Atresia and had to have a liver transplant when I was 11 months old.

Also, I’m a survivor of PTLD stage 3 Cancer, this happened when I was 2 and a half years old.

I don’t remember much from this time, but I do have scars to prove it.

I have also seen lots of pictures, and mum and dad are good at answering my questions and telling me stories.

My mum and dad tell me my illnesses are my super powers and I’m one of a kind.

They also, call me King Bill after a nickname that stuck in hospital.

They always tell me I’m brave, but I tell them I’m a scaredy cat because I’m scared of the dark.

Mum and dad say that one day I will understand why I’m a brave boy, but say I’m a little young to understand at the moment.

Some weeks my family live apart and I only have one of them at a time to look after me.

I miss my furry brother when I’m in hospital, but we do talk on video call.

My furry brother struggles with this type of communication, maybe because I can’t slip him a sausage at the dinner table or help him open the fridge to get a carrot.

Since being a baby, I have lived between 3 homes, my family home, my second home Southampton General Hospital and my third home Kings College Hospital.

Southampton Hospital is extra special as my hospital family live there, I have lots of friends there that know me.

My favourite activity is spending time with Louise the play therapist and she’s my best friend.

I find she really cheers me up and especially when I’m put into isolation for my own protection.

I don’t really understand this, but what I do know is, I can only see my parents and the staff.

I used to be frightened when the staff came in with their masks, face shields, aprons and gloves on.

But Louise explained that these are their special space invader outfits.

And the people inside them are my friends, I just can’t see them very well.

I love Louise, she helps me understand.

My third home, King College Hospital is miles away.

We pack like we are going on holiday and mum makes sure I put in all my special things.

Like my blue hospital monkey teddy, he’s been with me since I was a baby.

He comes with me on all my hospital stays, sometimes he has important jobs to do.

Like holding my hand or propping up my ventilation tubes.

Sometimes I find this home the hardest as its too far for visitors to come all the time.

But I do like the park we visit when I’m well enough to go out.

There is a great play area and they have friendly squirrels and parrots too.

One doctor told me to be careful of the squirrels as they have been known to nip.

And obviously they have enough to fix without an animal bite.

I have been told I’m in recovery and doing well, but I still have to go to hospital regular.

I often get anxious about hospital appointments, but mum helps me with this.

Mum’s very good at telling me stories to explain everything to me, and sometimes we play with Kevin the doll and act out the hospital visits.

This makes me feel better and happier to go in.

But I still get upset that I’m missing school.

I miss my friends, teachers and making my brain big.

I know I’m only 6, but I know I’m different.

I take tablets ever day, which I hate doing.

And must have monthly bloods to check I’m well.

I have lots of scars and my biggest one goes straight across my tummy.

Sometimes, I miss out on doing things I like because I’m in hospital or in isolation or just too tired to take part.

Sometimes these are birthday parties, Christmas’s, or a school production.

All these things make me sad occasionally and sometimes I cry and act out.

I feel like I’m the only one.

Until I found my new family.

My Transplant Games Family.

My team is called Kings Childrens Transplant Team.

This is my 3rd Transplant Games and this year we are competing in Nottingham between the 2nd to the 4th of August.

Apart from competing, we celebrity our successes and honour our donors and their families.

I’m so glad my mum and dad brought me, because they’re all similar to me.

They all take medication, have scars, undergo blood tests, and live in hospital at times like me.

My friends know how it feels to have a wobble when you remember things that are bad or have to do things that are new.

And they support me, by telling me and encouraging me to be strong.

Also, my mum and dad get to meet other parents and can make friends too.

But the best thing is, we get to keep in contact with our new friends after the games.

The best thing about the games is, I’m not alone any more.

This year I’m taking part in the obstacle race, sport stacking, long jump, 5-a-side football, 50-meter run and the tug of war.

I’m so excited.

But I need you all to help me raise millions of pounds, so Kings College Hospital Charity TLC can keep bringing children like me to the games.

Love Billy

Laura Twitchen is fundraising for King’s College Hospital Charity (justgiving.com)