After a fierce battle against ‘childhood Alzheimers’, five-year-old Roman James from Cheddington sadly lost his fight on April 11.
The LBO has written about Roman ever since his diagnosis with Niemann-Pick C disease in 2014 and his parents Ben and Scarlet have lobbied hard to raise awareness.
The words below are from Roman’s mother, Scarlet James.
“I would just like to thank everyone. Friends, family and even strangers for your continued support and care throughout this horrific journey.
“Roman touched so many people in the short time he was here and I know his name will be remembered for years to come.
“In January, Roman had to have an operation called a vesicostomy. This worked very well and it relieved Roman’s colic pain entirely.
“As the cold weather set in, Roman developed a chest infection and spent three weeks in hospital in February. Unfortunately it was only eight days before the next chest infection hit. This one he could not recover from and it quickly developed into pneumonia.
“We made the heartbreaking decision to say enough was enough on March 27 and brought Roman home for end of life care. He was riddled with pneumonia and not responding to any treatment.
“We prepared ourselves that he would not make our wedding. However, in true Roman style, he kept his promise to us and attended as best man. He stayed awake for most of the day and night and smiled throughout. I will never forget that gift he gave us, his presence made our wedding.
“Roman saw his fifth birthday on March 30, where his nanny Bev and grandad Sid arranged for a pony to come to the house to see him.
“He was very poorly but came into the garden and gave some lovely smiles.
“On April 11, Roman woke in severe distress. I needed advice and within the hour Dr Paula-Ann from Keech Hospice was there.
“That day was the worst day of our lives! We kept Roman at home surrounded by his family and little brother, Gabriel, just how he’d always liked it.
“Roman fought and fought with all his might as he always did but at 9.26pm he finally gave in and took his last breath.
“For the last three hours of his life, we had a nurse from Keech at home with us for support and having her there was priceless.
“His will and determination was incredible! I kept asking the nurse how he was possibly still going. She just kept saying his heart was so strong. I’ve always said if love could have saved him he would have been here forever.
“Keech helped fund Roman’s funeral and attended meetings with us and the funeral directors. Their support, care and love was simply indescribable and will never be forgotten.
“Roman may be free from the cruel disease but other children are not and there will be more and more diagnosed in the future.
“What we have been through, watching our precious little boy die in front of our eyes, we wouldn’t wish on anyone. We will always continue to fight, fund raise and raise awareness.
“We are holding our annual Roman James charity football match and fun day on 27th August at Pitstone Memorial Ground. All money raised will go to Keech Children’s Hospice.
“I am doing the Keech Colour Dash in July with 35 members of Team Roman, and friends and family are always happy to help with charity events.
“Our second son Gabriel is a godsend and keeps us going. He makes us smile through the darkness when we didn’t think it was possible.
“He will grow up to be Roman’s legacy because Roman has made him the kind, caring little boy that he is.
“Please remember to care about rare diseases such as Niemann-pick type C, only then will you see the utter devastation they inflict.
“Roman Nathan James – He came, he saw, he conquered and he will never be forgotten! #romanstyle”