‘OUR CHARLIE AND THE CHARLIE COOKSON FOUNDATION’

Our Charlie’ was born on the 13th April 2011. Such a brave little boy who fought & survived Ecoli, Meningitis & Pseudomonas 4 times by the age of 6 months! He also suffered from low muscle tone, some form of brittle bone disease for which he received hospitalised treatment every 8 weeks. This brave little soldier underwent so much surgery from Central lines being inserted to Portacath’s to Bronchoscopy’s he had suffered more than most adults would suffer in their lifetime.  He also has a blood disorder, which did not allow him to create a defence to infection

Charlie did not get home for Christmas 2011; he caught RSV, which turned septic. He was ventilated and admitted to Intensive Care.  His parents did not think he was going to pull through, but Charlie once again showed his strength and survived. 2012 did not start the way his Parents had hoped, Charlie was ventilated and admitted to PICU a further 4 times owed to aspiration, high blood pressure and infection.  After an EEG it was clear that Charlie also had Epilepsy.  This little battler fought his whole life! He was admitted to GREAT ORMOND STREET HOSPITAL in September 2012 for an overall review, this was unsuccessful in finding a diagnosis.

At around 15 months old Charlie’s Mammy and Daddy saw him every day smiling and laughing and getting a little bit stronger…they refused to look at the negative and let Charlie dictate his future. In the short time he had been at home parents learned that he loved the hydro pool, being pushed in his buggy, absolutely loved to be bounced and cuddled, had the cheekiest smile, loved the Smurfs and had such an adorable pet lip!! However in November 2012 his life was about to embark upon a great deal of pain due to the amount of seizures he was suffering again this little treasure would not see Christmas at home. In December, Charlie had a new Portacath fitted and an MRI was also carried out. The MRI showed changes to the white matter in his brain, which led to a brain biopsy, lumber puncture and skin biopsy in January 2013.  All results came back negative.

Owed to ventilation, Charlie incurred a partially collapsed lung, which led to him requiring oxygen 24/7.  Parents eventually got Charlie home in February 2013 where he enjoyed his sensory equipment, but every day was a battle, tweaking his oxygen to suit his needs, comforting his seizures, feeding him safely via his peg, giving him as much physio as possible to help his lungs and limited mobility.

In April 2013 Charlie was presented the South Tyneside's Child of Courage Award, it was a fantastic event for Charlie to be part of.  He was doing so well until July 2013, when he caught C-Diff an infection of the gut. He became extremely weak and lost a lot of weight, which eventually led to respiratory arrest and ventilation. Parents were told to expect the worst as Doctors did not expect Charlie to breathe when he was taken off the ventilator. Again, Charlie's strength, determination and sheer will to stay alive kept him going and proved the Doctors wrong! Charlie got home in September but only for a short while, he was admitted to hospital again due to his seizures.  They were very frequent an EEG showed that he was even suffering them when he was asleep.  His Mammy and Daddy became so worried about their “little legs” as his breathing was such hard work for him, they did everything they could to help him. They gave him physio, care, attended to his every need and gave him as much love their heart and soul could possibly give, If only their love could have been his medicine, he would have been the healthiest child alive. He was really struggling….Charlie had not smiled and gave those loving eyes for a while, his mind had been taken over with seizures and this mystery progressive disease finally had a hold of this courageous little boy.  His Carbon Dioxide was so high, his eyes looked so tired and much to his parents heartache their beloved Charlie passed away at 20:15 on the 29^th October 2013.

 THE CHARLIE COOKSON FOUNDATION

 Charlie had and is “still” having an amazing effect on those who loved him, read about him, met him or merely watched him. “The Charlie Effect” reminds everyone of how lucky they really are and to take care of each other.  He has helped rebuild the community spirit in his home town of South Shields. Sarah & Chris Cookson will do everything they can to keep their son’s name alive and use its power to financially support parents of seriously ill children. They know very well how difficult life can be when looking after a special child 24/7. They give up so much to look after their “gift” but the stresses and strains of “normal” life still takes its toll, the bills, food, petrol then add in specialist equipment for their poorly child! Life becomes extremely tough!

The Charlie Cookson Foundation is now a registered charity (1157545) and is growing from strength to strength. We provide financial support to parents of seriously ill children with life limiting conditions that require 24 hour nursing care or specialist nursing facilities. We understand how difficult life can become when you have had to reduce your working hours or in fact leave your employment as your child requires 24 hour care. The Charlie Cookson Foundation was created in 2013 after Charlie’s parents spent two and half years fighting for a better quality of life for their son. Sarah and Christopher Cookson had to reduce their working hours to care for Charlie full-time and know only too well how difficult it can be coping with the stresses and strains of everyday life on top of caring for a seriously ill child. When their worst nightmare came true and Charlie passed away, they set up the Charlie Cookson Foundation in his honour.

We aim to raise awareness of the difficulties faced by parents and carers who care for seriously ill children. In addition, campaigning to improve the quality of life of sick and seriously ill children, working with professionals to play an active part in the design and development of services to ensure the needs of parents, carers and children are heard and considered. We strive to improve the quality of life of sick and seriously ill children by providing information, advice and support. The Charlie Cookson Foundation have established many strong working relationships with professionals working in local hospitals to ensure that the needs and wishes of parents, carers and children are heard and considered.

“Mammy’s & Daddy’s need to be with their poorly child, without them they will not survive “CCF” will help relieve some of that financial pressure so they can 100% focus on their precious child” Sarah Cookson (Charlie’s Mammy)

To see more of what we do and read all about the families we have helped so far please visit our website at:

www.charliecookson.co.uk

Address: PO BOX 211, South Shields, Tyne and Wear, NE33 9EQ

Phone: 07834545804

Email: charliecookson@hotmail.co.uk