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  Jordan’s story

Up until the age of 2½ Jordan was a happy, lively and robust little boy never bothered by as much as a cold. He was slightly behind in his speech and language development, but no cause for great concern.

Then, in March of 2001, Jordan had his first seizure. Jordan’s GP immediately referred him to Professor Robinson, one of the most experienced Paediatric Neurologists in the world. Several tests and MRI scans all came back normal. Jordan was prescribed anticonvulsion drugs, which controlled his seizures fairly well. There was no obvious sign of deterioration, but it was becoming evident that Jordan was not developing like other children of his age.

In the spring of 2002, Jordan started tripping and falling over unexpectedly, an ERG (electrophysiological studies of the eye) in the summer gave first indication that epilepsy was secondary to some more serious disease. However, blood tests still came back inconclusive. Jordan went into hospital in August for more tests and another MRI Scan, which showed significant shrinkage of the brain, but still no clues as to what was actually wrong with him.

In October, Jordan was again in hospital for a liver, muscle and skin biopsy. By this time, Jordan had lost all speech was unable to walk unaided, needed help with feeding and it was obvious something very serious was wrong. However, nothing had prepared Jordan’s family for the diagnosis given 13th January 2003: Jordan was suffering from a rare neurodegenerative disorder called Neuronal Ceroid Lipofuscinosis (CLN2), also known as Late Infantile Battens.

Treatment: None
Prognosis: Death

Jordan’s parents wanted to find out what was wrong with him so they could make sure he was given the right treatment. But never in their worst nightmares did they imagine such a devastating disease would be diagnosed. In fact, like most people, didn’t even know it existed.

Anyone who has met Jordan knows he was one of the strongest, most affectionate and inspirational little people they will ever meet. He teaches everyone around him about strength, perseverance and the daily struggle to carry out some of life’s simplest tasks whilst keeping a smile on his face.



Jordan’s first day at school

Sadly on the 26th December 2007 Jordan's brave battle against Battens ended, Jordan is now in a better place, where he can run and play and do everything he ever dreamed of.

There is an informative article concerning Jordan that can be read at the following link. http://www.southwarknews.co.uk/00,news,8508,440,00.htm

A poem about Jordan by his friend Diane.

You stayed with us for a short while
But oh! What a special child
With your blonde hair and eyes of blue
And radiant smile shining through

That certain look, a cheeky grin
These precious things made us begin
To see a different life for you
A type of life you wouldn't choose

You touched our hearts
You made us see
What better people we could be

And then, when it was time to go
We all hope we let you know
How much love we had for you
Respect, pride, admiration too

For Jordan you were a special boy
Who never ever asked us why?

Jordan's 9th birthday

Jordan’s 9th Birthday 13.09.07

Mum, Jasmin and Mia

Dad and Jasmine

‘Jordan’s Corner’ in Albin’s Memorial Garden

‘Jordan’s Corner’ in Albin’s Memorial Garden