Karen, Ben and Bailey Marshall-Rogers have spoken about the special times they spent with Seth who died in June, aged nine months, and how they now want to mark his life.

Seth suffered from a rare condition called Aristless Related Homeobox (ARX) but then became the first known baby in the world to have a mutation that lead to a brain atrophy which meant his brain shrank at a rapid rate.

They want to highlight the condition and the difficulties that parents with very ill children face.

Speaking to The Bucks Herald his mother said: "You just want to do something, but you can't. You have to sit back and watch your child waste away. You know it's happening in the back of your mind, but you just carry on.

"Shortly before he died they said he had no more than 48 hours to live, but even then we were going to make the most of our time.

"The last couple of days we couldn't hold him much because he was so agitated.

"He stayed in bed with us and we cuddled him - we were just told to be with him and he was in our bed when he died.

"He never complained even though he had so much done to him with lumber punctures, blood taken from him two or three times a day for weeks, scans, ECGs and being in intensive care. He always had stuff plugged into him and he just used to let them do it. He never got stroppy; he was always so good.

"All the doctors and nurses loved him so much because even though he couldn't laugh and smile he seemed happy and content; he was never miserable or crying, he accepted that this was his life."

Seth at first appeared to be a healthy baby, but it was after four months that things didn't seem as they should be. He had seizures, his appetite went and his development was slow. For months after, his parents were given no diagnosis but they remember vividly that February 22 was the date they were given the prognosis that Seth was going to die.

At first they were told he could live for a year or so, then that went down to months, weeks and then hours. All the time they kept their three-year-old son aware of what was happening.

Karen added: "Bailey knows that Seth's in heaven, he knows he died, but he says 'don't be sad mum and dad, he'll be back soon' so he doesn't quite realise that it's permanent."

The family talk about Seth every day and light candles for him, telling him they love him.

The four of them did manage a holiday to Suffolk, but this was cut short when Seth got a chest infection and had to be admitted to hospital.

He was a happy child until the illness took hold. A glimmer of the old Seth came back with some treatment in March when he started smiling again, but this was short lived and as soon as he started smiling again he stopped as the illness took hold of him.

Ben said: "We didn't do anything significant with him, but we will always remember him for his smile.

"At the beginning we had three or four months of everything being normal so we will always remember those times when life was great.

"When he was poorly there were always people around us so just having the two children to ourselves and just doing normal things together were so special to us. After all the stuff he went through we will always remember him for being so happy and he had such a cheeky grin."

On September 6 the family will be holding a fun day at the William Harding School, an event to raise money for a fund they want to set up in Seth's name.

They hope this money will be used for research into ARX or go to supporting families in a similar position to themselves.

Would you like to pay tribute to Seth?

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