Stamford parents thank family of Tommy Rodgers as awareness of Kawasaki disease saves their son’s life
The legacy of a toddler who died from a little-known disease has helped to save the life of another little boy in his hometown.
Rob and Francesca Knight say their 20-month-old son Edward would not have survived Kawasaki disease without the campaigning of Dan Rodgers and Katie Youngs who lost their son Tommy to the condition in January.
Tommy died, aged just 14 months, after contracting the disease which affects young children and causes inflammation of the blood vessels.
It sparked his parents into a campaign to raise awareness of the condition and improve training among medical staff.
“It’s so, so tragic what happened to Tommy, but that is the reason Edward is still with us,” said Rob
“Without that initial awareness we wouldn’t have our son either. It’s an unpayable debt.”
Having spent almost all of August in Peterborough and Addenbrooke’s hospitals, including five days in an induced coma, Edward will need medication for the rest of his life.
But he is now well enough to return to nursery and a more normal routine after months of regular hospital visits.
“I’m so glad that Tommy’s story saved Edward’s life - now I can see the pictures and videos on Facebook of him having fun,” said Katie.
“He’s around the same age as Tommy and they do look very alike.
“I don’t sit there looking at him with jealousy; I look at it with so much pride, knowing my son changed that child’s life and he didn’t even know it.”
Edward was recovering from hand, foot and mouth when he developed a fever in late July.
Rob and Francesca were following NHS online advice to wait until five days of fever before seeking help, but on the third day they noticed their son had bloodshot eyes and some swelling around his face.
Thanks to posts they had read from Katie, they recognised them as symptoms of Kawasaki disease and called 101.
“Without that we simply wouldn’t have known what Kawasaki was and we might not have been as urgent,” Rob explained.
At an urgent care centre in Corby they were immediately told that Edward needed hospital attention immediately and they raced to Peterborough.
“It was such a good thing we hadn’t waited any longer because within a few hours he was unconscious and by the next morning he was put in a coma to save his life,” Francesca recalled.
“You ask the typical question, ‘is he going to be okay?’ and they just wouldn’t answer us, they just kept repeating ‘he’s very poorly’.
“When he was being put into the coma, I went to walk out of the room because I just couldn’t watch and they told us not to go too far unless we had to say goodbye.
“That was the worst moment of our lives.”
Rob added: “It came down to a critical 12 hours. They said if we had waited until the next day, they could pretty much guarantee the outcome would have been very different because the sepsis would have been so much more advanced.
“His gut had pretty much shut down and from there it would have moved on to his liver and kidneys and progressed quite rapidly through his body which is why he was put into the coma.”
Edward was transferred to Addenbrooke’s who carried out a range of tests and treatments as they tried to pin down the cause.
After five days in a coma, Edward showed enough signs of recovery to be transferred back to Peterborough, but his condition soon deteriorated again.
This time a heart echo test showed up inflamed arteries and a coronary aneurysm, confirming Kawasaki.
“It gave us a bad feeling straightaway,” said Rob.
“We got the impression that the doctor had seen something this time which he didn’t like.
“He ticked all of the boxes for Kawasaki disease, but only one or two symptoms at a time, while generally it’s usually all at once and it’s really obvious.
“That’s why it took a week-and-a-half in hospital before the consultant confirmed it.”
Blood transfusions and antibiotics at Addenbrooke’s had helped to slow the inflammation, and once Kawasaki was confirmed, a combination of antibiotics and medication helped put Edward on the road to recovery.
At the end of August, mum and dad received the news they longed for - Edward could come home.
With a regime of medication, multiple weekly check-ups at Peterborough, and a monthly trip to Great Ormond Street Children’s Hospital, in London, Edward is making good progress.
The aneurysm is already retreating, well ahead of schedule, and a normal routine is gradually returning for the lively and playful toddler.
Rob admitted a sense of guilt as he thanked Katie’s sister, Emma, an old school friend, after such conflicting outcomes for the two little boys.
Both sets of parents met in person for the first time last Friday, fittingly at a fundraising quiz in Tommy’s memory for Societi - the UK Kawasaki Disease Foundation
For Dan and Katie, working with the charity, and their campaigning for greater awareness is a way of helping them come to terms with their devastating loss.
“I like to see it that if I get up every day and do something for the charity, I’m still working as Tom’s mum and have a purpose,” she said.
“I will always be Tommy’s mummy, but I don’t get to be his mum every day. What I can do is make sure I can try and find fundraisers, try and share awareness, keep on top of the posts.”
A series of fundraising events have been held as the community rallied around, while Katie regularly posts on a Facebook page set up for Tommy.
And word has spread far and wide.
Katie has been contacted by 42 parents who have Tommy’s story to thank for swift diagnosis and early treatment for their children.
She was even approached by a couple from Wiltshire while on an overseas holiday.
“They came up and asked me about my Societi charity band,” she recalled.
They said ‘have you heard of the little boy, Tommy Rodgers? He saved our grandson’.
“It’s the amount of awareness, it’s the amount of people talking about it, the amount of articles wrote, and posts that are shared that are creating a mass snowball effect.
“There are children who are getting a second chance. There are families who won't be in our world ever. It just proves that it does work.”
Fundraising in Tommy’s memory has helped Societi to send out Kawasaki training packs to all 99 GP practices across Lincolnshire, and now Cambridgeshire.
It has improved understanding of a disease which Katie insists is no longer as rare in the UK as is portrayed, and specifically helped staff at Peterborough treat Edward.
Katie intends to take the issue all the way to Parliament and drive legislation to ensure Kawasaki training becomes mandatory in children’s and cardiac hospital wards.
It is all part of Katie’s ‘grieving loudly’ process, to help drive something positive from the family’s very personal tragedy.
“The more we all speak up and work together, the more chance of making a difference,” she said.
“I could have sat here and grieved quietly, but how is that going to make any difference? How is that going to give Tom’s life a story and justice?
“He died from something so big and unheard of, it seems stupid to sit and grieve quietly when there are so many children and parents out there who need what I needed - someone to speak up louder.”
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Katie added: “I never want any parent to be in my world, and if sharing my son’s story helps other people then my son died for a purpose.
“He selflessly sacrificed himself for everybody else to be in a better place. That makes me really proud as his mum because he’s making such a difference.”
