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Heartbroken parents have paid tribute to their “cheeky, happy and loving” son who died just days after his 15th birthday.
Logan Weller, known as Lolo, from Stanhope in Ashford, died at Demelza House in Sittingbourne after battling various health conditions since he was 13 months old.
His parents, Ade and Steff Weller, say while Lolo did not have the easiest start in life, he always fought hard with a smile on his face.
Mrs Weller said Lolo was a “typical cheeky toddler” but suffered his first seizure shortly after his first birthday which left him weak down one side.
After three days in hospital, doctors at the William Harvey Hospital in Ashford sent him home with rescue medication - emergency medicines used to treat seizures outside of hospital.
But in August 2011, aged two, he had another seizure that didn’t stop with rescue medication and Lolo was rushed to the Evelina Children’s Hospital in London.
He was given strong anti-epileptic medication which did not work and Lolo lost his ability to see, eat, and control his bowels and all muscle tone.
Mrs Weller explained: “I'd never been in an ambulance or to London before but we were rushed to the Evelina.
“That's then when they diagnosed him with epilepsy.
“They then said at the end of August they didn't think he'd make it to that Christmas but he proved them all wrong.”
Over the years Lolo, who loved Disney films and motor racing, has been through multiple surgeries and treated for sepsis 10 times.
In July, he was again taken to the Evelina as his stoma had failed to work.
Doctors took him into theatre for major surgery and found his intestine was wrapped around the stoma and had lost its colour.
The surgeon kept him in the paediatric intensive care unit but Lolo’s condition did not improve and his family were faced with a heart-wrenching decision.
Mrs Weller said: “They said the kindest thing was to let him go because any treatment would just be prolonging his death and he would be in agony.
“That's where we ended up back in Demelza.
“We used to call it his holiday home because he loved it there, he knew how to get the carers and nurses around his little finger.
“We got to say goodbye to him in his favourite place.”
Lolo was transferred to Demelza House for end-of-life palliative care and died on Friday, July 19. He will be laid to rest at Charing Crematorium on August 30.
Instead of calling it a funeral, Mr and Mrs Weller are calling it a ‘fun-eral’ as they hope to make it a celebration of Lolo’s life.
Family friends have started a fundraiser to help the family pay for the service as they have had to overcome various costs since losing their son.
Mr Weller said: “The Motability (wheelchair-accessible) vehicle has been taken back so we had to scrape around and use every bit of money we could to buy another car.
“But we still want to make sure Logan has a good send-off.
“We miss him so much. I find it hard during the day because I'm not doing the stuff that I normally do, like getting him dressed.
“I still get up early as if he's there, waiting for me to get him up.”
So far £800 out of the £5,000 needed has been raised.
The Wellers live in a specially adapted house with a lift that catered for all of Lolo’s needs.
Now the couple hope to foster a child with additional needs to improve another young person’s quality of life.