“I try to walk, I try to talk, I try to eat each day. This disease is slowly talking parts of me away.”

Mel, mother to 11-year-old Matilda, the first child in the UK to access enzyme replacement therapy, shares her poem telling their eventful story as seen through Matilda’s eyes.

“Mummy, don’t let me die”

I could walk, I could talk and I hit all my milestones,
but started to lose my ability to speak.
When I was three the seizures started, you see.

One day mummy found me lying in bed,
I wasn’t breathing – my mummy thought I was dead.
After dialling 999 and mummy screaming outside,
one of my lovely neighbours gave me mouth-to-mouth and resuscitated me this time.

Then, as more time went on, the more seizures I had.
No epilepsy drug would cover my seizures, and we became so sad.

I started to scream night after night,
not knowing what was wrong with me; obviously – I was losing my sight.

I would walk into doors and I would fall all the time
but doctors would not listen or give me genetic testing at that time.

Living in hospital most of my life,
trying to find out what was wrong with me was taking some time.

I would hallucinate, and drop attacks started where my legs gave way.
I would bang my head – Mummy asked for a helmet but the hospital sent us away.

After meetings and meetings we were always sent home,
until one day, I must have fallen and banged my head,
I had a bruise on my ear the nursery said.

My mummy did not get a yellow card to say,
they phoned social services and I was taken away.

My mummy was forced to sign a form to give me away.
She did not know what she was signing for that day.
The social worker did not listen to what my mummy had to say.

I stayed in hospital all alone,
My auntie had to stay with me as I could not go home.
My mummy started filming me each day
watching me deteriorate in each and every way,
losing the ability to walk and slowly stopping eating, by the way.

I was losing all abilities and sucking my thumb,
having problems with my bowels, I felt like nothing could be done.

Doctors could not get my meds right, and I stopped breathing one day.
Mummy kept screaming and crying for someone to listen to what she was trying to say,
but the doctors would not listen to her.
Why does no one seem to care?

Why can’t they see
there’s something wrong with me?

I screamed in the hospital night after night
and struggled to find a nurse in sight.

My legs get restless and I cannot sleep
Because you took my mummy from me.

Living at my auntie’s I had a big seizure and scared everyone
I had to go to hospital but mummy wasn’t allowed to come.
Without my mummy the ambulance came and took me away,
My auntie came instead and stayed beside me all the way.

Then I had another seizure – this time a bad one at school.
Again mummy wasn’t allowed into the hospital. Why is this so cruel?

My mummy fought for me every morning and night.
She knew there was something wrong with me, but doctors brushed me aside.

I was left in hospital some nights all alone.
I banged the same ear again but this was not documented until my mummy told them so.
I fell out of bed two nights in a row, when the nurses were supposed to be looking after me.
But no one is listening to my mummy. Can’t you see there is something wrong with me?

My mummy went through the courts, and social services had to work with her.
My mummy said she wanted genetics doing and she felt that no one cared.

Finally they pushed the hospital for this to be done.
My mummy was told on Children in Need day in 2013,
I will die young….

My mummy was handed a piece of paper saying it’s Battens disease, you see,

and there is no more they can do to save me.

***

Hearing of a drugs trial my mummy whisked me to London in her arms
to try get a glimpse of hope and save me from more harm.
My mummy begged the London hospital for me to stay
But no one could give me the medication to get me walking again someday.

My mummy begged Ruth Williams, the neurologist, to help us change my meds,
our prayers were answered: I started to walk and eat again, enough said.

Then a breakthrough: I was suitable for a trial to help slow down the disease,
I was the first UK child to try this new drug that might be the answer we need.
The process was hard and scary and tough.
But someone must go first, and this time it was us.

The system in some of our areas are failing us as children to get us what we need,
and this drug trial could help us slow down this disease.

***

I try to walk, I try to talk, I try to eat each day.
This disease is slowly talking parts of me away.

I see my mummy frightened as she’s watching me slip away
My mummy breaks down and cries most nights
‘cause she’s frightened of me dying.
Gosh, did she put up a fight.

She fights the system every day for me to get things in place,
to get passed from pillar to post. Gosh it goes at such a slow pace!

And when she gets angry she cries once more
as she feels as she is walking this path all alone, and every way we turn it feels like closed doors.

My mummy is grieving, why can you not see?
She’s angry she’s upset, she’s always crying over me

Every time Battens takes a part of me, it takes a part of mummy too
It’s a constant grieving process that we both are going through.

The hurt the pain the sorrow inside,
will anyone ever understand our life?
My life has been in London hospital every ten days
to help find a cure to take Battens away.

What my little body has gone through to hopefully save children’s lives one day.
We need to save more children, and we hope to find a way.

It’s been a struggle, but it isn’t really all bad –
I’ve had fun and holidays too, and for that I’m really glad.

I’m so relieved my mummy put me forward, as it’s saved my life to this day.
We’ve finally got NHS treatment for all, to help keep this disease at bay.