Stamford family pledges to raise awareness of Kawasaki disease following the death of 14-month-old Tommy Rodgers

Grieving parents have vowed to honour their son’s memory by campaigning to save other children’s lives.

Fourteen-month-old Tommy Rodgers only died two weeks ago but his family is already making huge strides to do good in his name.

Tommy had started to feel unwell in early January and was diagnosed with Kawasaki disease a week later. He was treated in hospital and later discharged, but his health took a turn for the worse and he was rushed back into hospital where he died on January 25.

His mum Katie Youngs said: “I just fell to the floor when they told me he was gone. All I left the hospital with was a box containing his hand and footprints and a lock of his hair.

“I'll never fill this hole in my heart and I don't want anyone else to experience that. We need to spread awareness about Kawasaki disease otherwise Tommy dying has no purpose."

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Tommy was his father Dan’s only child and the youngest of Katie’s four children. His siblings Krystal, 11, Ezme, eight, and Frankie, six, loved helping to look after him, making bottles and changing his nappies. Frankie has been reading stories to his brother in the sky each night since he died.

Katie said: “Tommy was so much fun and always the brightest person in the room. He was cheeky, happy and never cried. He was also a little groover and loved to dance. Super Trouper was his favourite.

“The house is so quiet without him.”

Katie first took Tommy to see a doctor in early January. He hadn’t been feeling well and she wanted to check if it was safe for him to have his measles, mumps and rubella vaccine (MMR) as planned. On medical advice he had the jab the following day but developed a high temperature and a rash.

After calling the NHS 111 service, an ambulance was dispatched and Tommy was taken to Peterborough City Hospital where he was given antibiotics. He had a series of blood tests and scans before being diagnosed with Kawasaki disease. He had developed all the classic symptoms including red eyes, a strawberry-looking tongue, cracked lips and a persistent fever.

After six days Tommy was discharged with medication but returned several times during the following days for more blood tests to monitor his condition.

On January 25, Dan and Katie woke Tommy at 6.20am for his medication but noticed he was struggling to breathe. They called an ambulance and Dan had to perform CPR on his son with support from the 999 call handler. Paramedics took him to hospital at 7.15am accompanied by his dad, but by the time Katie had arranged care for the other children and arrived herself, she was told it was too late and Tommy had died.

Katie, 31, said: “If we can save one life by sharing Tommy’s story, that will mean everything. We always said Tommy would change the world and now we know he will make a difference, just not in the way we thought or wanted.

“If someone else had shouted loudly about this disease before, maybe my child would be here now. We hope that talking about our loss could stop other people from feeling this heartache."

The family, from Lambeth Walk in Stamford, are waiting for the results of a postmortem to confirm the cause of Tommy’s death before they make arrangements for his funeral. In the meantime they are teaming up with Societi, The UK Foundation for Kawasaki Disease, to set up a fund in his memory.

According to the NHS, the cause of Kawasaki disease isn't fully understood but a child may be more likely to develop it if they inherit certain genes from their parents. Its symptoms are similar to those of an infection but no bacterial or viral cause has yet been identified.

The condition mainly affects under fives who are likely to have a high temperature for five days or more, with one or more of the other symptoms – a rash, swollen glands in the neck, red eyes, cracked lips, a bumpy red tongue, a red mouth or swollen and red hands and feet.

Without treatment the condition can lead to heart problems which can be fatal in 2 to 3% of cases.

An online fundraising page has been set up to support Katie and Dan financially while they come to terms with their loss. More than £3,700 has been donated so far at tinyurl.com/TommyRodgers

Tommy's uncle Jordan Rodgers has also written a rap and released the video online to raise awareness of the condition.

The founder of Societi, Rachael McCormack, said: “Despite Kawasaki disease being increasingly common, low public awareness means it’s often initially misdiagnosed, putting children’s hearts at risk. We must change this and stop Kawasaki disease having the devastating effect it has on far too many children and their families.”

The charity’s research estimates that 1,000 children will be admitted to UK hospitals with the condition this year – more than are admitted for measles.