General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
15 Debbies Story 2

“Batten disease stole his future, although his spirit is still there intact, never to be defeated, I can assure you, that is a fact”

Debbie Norris, grandmother of 22-year-old Jordan who has Batten disease, finds that putting her feelings into poetry helps her through their heart-breaking journey

Sometimes in life your path crosses with someone who will teach you many lessons and changes your life forever

My Grandson is that person in my life and the inspiration for much of the poetry I write.

Jordan was born a happy healthy baby in September 1999. I remember feeling overwhelmed with love for this bundle of joy as I held him in my arms for the first time.

He went on to meet all of his childhood milestones. Always a cheerful little chatterbox who loved Thomas the tank engine and travelling on trains.


Then just before he started primary school my daughter noticed he was bumping into things and he started sitting right in front of the television. She took him for an eye test and he was prescribed glasses which didn’t seem to help at all. Eventually he was referred to Great Ormond Street Hospital where he was diagnosed with a condition called Retinitis Pigmentosa and we were told he would gradually lose his sight.

Two years later Jordan had his first seizure. His eyesight was rapidly declining, his seizures were increasing and behaviour problems began. We began having doubts about his diagnosis of RP as it just didn’t seem to fit with his symptoms.

After many phone calls with Jordan’s paediatrician at our local hospital we got Jordan referred to the Wolfson Behavioural clinic at GOSH. They in turn referred us to the Everlina children’s hospital at Guys and St Thomas’s, where he was officially diagnosed with juvenile Batten disease at the age of twelve. We were heartbroken.

Writing as therapy

Overwhelmed by feeling of grief, bewilderment and utter heartbreak I wrote my first poem ‘Our Path to Batten Disease.’ Putting my feelings down on paper was very therapeutic and continues to help me through this heart breaking journey. 


Jordan is now twenty one years old and for the last four years has lived at Heather House. The way Jordan has coped with all the changes in his life, especially during this pandemic, fills me with awe.  I am so grateful to all the staff at Heather House past and present, who have helped and supported us all during this unprecedented time. They have been amazing.

Even though Jordan’s mobility and speech has declined due to Batten disease he will always have that cheeky grin and twinkle in his eyes. He is my inspiration, always.

I silently watch you fading away

I silently watch you fading away
Before my very eyes
My heartbreak and my pain
Is getting harder to disguise

This cruel disease is taking
A bit more of you each day
I watch your fierce determination
Now slowly begin to ebb away

The memories of yesterday
Filled with happiness and joy
Serve only to remind me
Of what you have lost, my darling boy

The happy, carefree child
Full of energy and fun
The charming little chatterbox
Who always had us on the run

You cannot run around now
Your chattering is not the same
Your once clear memories fading
Batten disease has staked its claim

It’s hard to watch these changes
Knowing there’s nothing I can do
But to love and give you comfort
And always be there for you.

Oh how I long for our life before Batten disease

Oh how I long for our life before Batten disease
That time of ignorance and bliss
Looking forward to the happiest of futures
These are the things that I miss

Would he have been a policeman or a train driver
As these were his childhood dreams
Until Batten disease took his eyesight
And his life tore apart at the seams

Batten disease stole his future
Although his spirit is still there intact
Never to be defeated
I can assure you, that is a fact
This bright happy boy I remember
With all of his chatter and charm
He is still an excellent wordsmith
And holds the world in his palm

Sadly we cannot go back to the past
It’s the future we now must embrace
Whatever Batten disease throws at us
We must now have the courage to face

And we will, it will not destroy us
Although it may sometimes bring us to our knees
We will still carry on one step at a time
You see, we will not be broken by Batten disease.

Make a donation:

To make a donation please click the button to the right.  This link will then take you to a PayPal page where a donation direct to us can be made.

The amount you enter is your choice and PayPal can collect the funds from a debit or credit card account.

Thank you for your donation.