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Charity of the Year 2016: Parents Consortium vital in looking after young Charlie

You are unlikely to find a greater bond between a woman and her grandson than this one.

Norma Carmen, 70, is the sole carer of her grandson Charlie, who has lived with her since he was 15 months old after the tragic death of his father.

The 18-year-old was diagnosed with Lennox Gestaut syndrome at the age of just four, which has impaired his intellectual development through a range of seizures.

He suffers from regular chest infections, an underactive thyroid, severe psoriasis, and has the understanding of a five-year-old. In 2015 he contracted sepsis, leaving him with limited movement in his left arm.

Charlie is one of the many disabled youngsters reliant on the support of the Parents Consortium
Charlie is one of the many disabled youngsters reliant on the support of the Parents Consortium

Throughout all of this he has relied on the love and support of his grandmother, who herself has often been grateful to disabled children’s charity the Parents Consortium.

Charlie makes regular visits to the Messenger Charity of the Year’s Hextable headquarters, where he has been taught to communicate with sign language and enjoyed time watching DVDs and playing in the whirlpool bath.

Norma, who is affectionately known at the charity as Nanny Carmen, said: “Charlie loves his visits to Parents Consortium and is happy and well cared for there.

“I have a great deal of respect for the staff and I trust them to care for his needs as well as offering support to me.

Charlie wearing a hat he made during a craft workshop
Charlie wearing a hat he made during a craft workshop

“Recently they picked me up from home and took me to hospital when Charlie had a serious seizure and stayed with me until they knew he would be okay.”

Charlie has also received care from the Demelza hospice and attends the Young Epilepsy Specialist School in Lingfield, Surrey.

When he is at the Parents Consortium he can regularly be seen with a crash helmet on to protect him from any falls, as he is unable to walk unaided.

He also requires constant night supervision, which is why so many people and charities have had to rally around him to keep him safe.

“Charlie loves his visits to Parents Consortium and is happy and well cared for there" Norna Carmen

The role of his grandmother, though, has been especially pivotal. The Parents Consortium’s Caroline Brinkman said: “Nanny Carmen is a lovely, lively, and inspirational 70-year-old lady who gives all of her time to her grandson without complaint.

“Sadly she also lost her husband a while back so she is now the sole carer of Charlie and his future.

“She fights for everything that he is entitled to and is always up for a challenge, but occasionally needs a little help.

She said recently Parents Consortium is the only place that she is happy to leave Charlie for a short break.”

The charity relies heavily on donations to keep its good work going. You can support our charity of the year by donating at parentsconsortium.org.uk, or by texting PCPS15 followed by the amount you wish to give to 70070.

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