My beautiful little boy Charlie Shore was born on the 6th February 2012 at 6.15am in room 6 at Wansbeck General Hospital,  a healthy 8lb 5oz after a textbook pregnancy and an even better labour!

Charlie grew to be the happiest, smiliest, cheekiest little chappy you could ever imagine! He had his mammys piggy nose, his daddys temper and the most amazing spirit about him!

On the 6th February 2013 we celebrated Charlies 1st birthday! we had a huge rainbow cake that his grandma and me made and had a tea party with all the family!

A few days after his first birthday we noticed that charlie was having strange eye movements, we took him to A & E and thats when our nightmare began.

After many MRI scans, Lumbar Punctures and blood tests the neurologist sat us down in front of a scan and explained that his diagnosis was Leighs Disease an aggresive form of Mitochondrial disease.

Leighs Disease is an extremely rare terminal disorder and there is no cure or effective treatment for it. It is a neurometabolic disorder that affects the central nervous system.

We left the hospital that night with charlie feeling numb. Our lives had been changed forever. Our healthy full of beans happy boy was suddenly terminally ill. We could not get our heads around what had happened.

Over the next year Charlie put up a huge fight against the disease, he had skin biopsys taken, more Lumbar Punctures, blood tests and MRI scans, he bounced back from 3 Respiratory arrests and several stays in intensive care on a ventillator, he eventually had to be tube fed and i spent each morning preparing a cocktail of vitamins and drugs.

We were fighting a losing battle.

On Christmas Day 2013 charlie took poorly and never returned home from the RVI. Charlie died on the 6th January 2014 exactly 1 month before his 2nd birthday. He put up an amazing fight and we could not be more proud of our little lion.

Charlie passed away peacfully with us in the bed with him listening to music and covering him in kisses. Each time we were in hospital (which was a lot!!) The Sick Childrens Trust allowed us to be with charlie every second of the day, they gave us comfy beds to sleep in, a place to wash, rest and gather our thoughts which meant we never had to be far away from him. They have helped and continue to help many families like us. We will forever be in their debt.

As part of coming to terms with losing Charlie i am making it my mission to raise as much money as possible for the people and organisations that helped us.

I am well aware that times are hard at the minute and people do not have a lot of spare money but i can honestly say that the smallest donation can make a huge difference

It costs £27 to give a family a home at crawford house in the grounds of the RVI. If i reach my target of £300 it means that 11 families could have a room for the night and would be able to stay close to their sick child.

So heres to 13.1 miles of pain, probably in the rain with lots of blisters and chafing and probably a few tears!

looking forward to it!  :S

Charlies Mammy xxxxxxxx

 

 

 

 

 

 

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