A couple took the body of their son home for four days following his tragic death.
Rubén McKeown was diagnosed with X-linked myotubular myopathy when he was just six months old.
The condition, which has no known cure, causes muscular weakness and impacts functions like swallowing, the Liverpool Echo reports.
With an average life expectancy of just two-and-a-half years for the one in 50,000 people born with it, the outlook for the Liverpool boy was not good.
His parents were therefore delighted when Rubén began coping surprisingly well with the illness.
In his first couple of years he managed to eat independently and seemed to be enjoying life.
Sadly his health suddenly deteriorated after he picked up a virus which subsequently led to complications with his lungs.
If you want to raise money for two children cooling blankets, join the family's fundraising effort here
After two weeks in intensive care in Alder Hey Children's Hospital Rubén developed mucus in his airways and died three weeks ago, on February 13.
The cause was adenovirus with associated pneumonia.
Following his tragic death Sian and partner Adam were allowed to take their son home, thanks to special cooling blankets which manage a person's core temperature when they have died.
For four days the couple were allowed to spend time with their son and say an emotional goodbye ahead of his funeral.
Sian described the experience as a "four day sleepover" during which they "held him, kissed him, changed him and took him out to see the horses which would take him to church" for his funeral.
Mum Sian said: "Losing Rubén was heartbreaking and it feels like someone has robbed me of my job as he was my only child.
"But having him home for those days afterwards was beautiful.
"Even though our hearts were breaking, to have that time with him was so very special.
Rubén was no ordinary little boy, his parents said.
"He was a courageous, odds-defying little warrior," Sian continued.
"He was always up for a challenge and often surprised us at every instance.
"Despite our boy's diagnosis, we never dreamt this tragic end to his life would be the outcome, as we always hoped to have a cure in time.
"Alder Hey were truly beautiful with us, whilst we endured the pain of our loss and gave us endless support at every angle throughout the tragic loss of Rubén."
The 27-year-old, along with partner Adam, 28, have launched a fundraising effort to raise money for two children cooling blankets.
So far, more than £6,000 has been raised.
Sian, a healthcare assistant, said: "These four days at home in his blanket enabled us to grieve for him, hold him, kiss him, study his beautiful little face and allow our family to shower him with love all whilst ensuring his body was preserved to ensure his perfect little self remained the same.
"The peace it brought to myself as his mummy and his amazing daddy cannot be put into words and the thought another family may not be as lucky as we were in Ruben's final days with us, does not bear thinking about.
"We want to try and ensure that other families who suffer the devastating loss of their precious children have this indescribable opportunity should they wish to In the future."
The couple are looking to set up a charity to help bereaved families in the future.
Sian added: "We hope we can make something good out of Ruben's passing, he was too much of a brave little boy for this to be the end of his legacy."
To view the fundraiser click here.
