Family’s tribute to Duchenne muscular dystrophy sufferer Jake Whitehair, who died aged 18
A family has paid tribute to a brave teenager who suffered with the muscle wasting disease Duchenne muscular dystrophy and died suddenly, aged 18.
Jake Elwood Whitehair passed away at the family home in Dereham on August 23 – days before he was due to start a course at Easton College, having graduated from the Clare School in Norwich earlier in the summer.
His mother Brenda said she was 'incredibly proud' of her son, who took each day as it came and never complained about his condition.
'He loved nature and being outdoors and had a gift with animals,' she said.
'His dad, Mark, used to bring home various creatures and Jake would look after them. One day Mark brought home three ducks. Jake was only little and he couldn't get around very well but he was the only one who could catch them. We have had lizards and fish, he loved them all. He knew so much about them as well because he was always reading about them in his books.'
Jake had also gained a GCSE in art and showed great talent as an artist, sketching until a few days before his death.
Mrs Whitehair said Jake was diagnosed with DMD at the age of five. He was their second of three sons – Robby was 12 years older and Ethan was born three years after him.
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'He could not walk very well so we took him to the doctors,' she said. 'Nothing can prepare you for that diagnosis. It is supposed to be inherited but we were all tested and no-one in the family was a carrier. But there is nothing you can do about it. People say you are brave but we are not brave, we just had to carry on and get up every day. He was the brave one.
'He was such a cute little boy, so smiley, and it was amazing how he got round the house. I found his name carved into the fireplace and I don't know how he got up there to do it. He had to leave his mark.
'He went off his feet at the age of 12 and recently we noticed he was losing a bit more mobility but he kept himself busy and could do most things he wanted to do. He went out for a drink with his dad on his 18th birthday last November and friends would come round and bundle him into the car to take him out.'
She said he had two main carers, who he ran rings around, as well as a large extended family who all adored him. His grandparents would often look after him.
'He had a great sense of humour,' said Mrs Whitehair. 'He loved horror films and his X-box and made an impression on everyone he met.'
She also praised the healthcare profession who looked after Jake throughout his life, from his physio June Fisher to the team at the Norfolk and Norwich University Hospital and also carers at Quidenham Children's Hospice where he would spend a couple of weekends every year.
'The last couple of years he had really started to come out of his shell and become more confident,' she said.
Cousin Charli David, who had been one of his carers for the past five years, said she had some amazing memories of their time together.
'We used to make up songs together because he wanted to be a rapper,' she said. 'He called himself Insane Snake. He was never going to be the next 50Cent but we had a lot of fun writing silly songs. He was very creative.'
Jake's funeral service takes place at St Nicholas Church, Dereham, on Monday, September 15 at 2.30pm, followed by private cremation.
Family flowers only please but donations if desired to be shared between EACH (Quidenham) and DMD may be given at the service or sent c/o and payable to W C Littleproud & Son (Donation Account) Family Funeral Directors, Hale Road, Bradenham, IP25 7RA.
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