IN THE Lancaster house, eight-year-old Toby is known as ‘Toby Trouble’ - a whirlwind of fun who loves music and playing with his older brother Callum.
But as his mother Joanne says, he has been through more in his almost nine years than most people will put up with in a lifetime.
Toby, who has Down’s Syndrome, and has undergone three major heart surgeries and a raft of other procedures that have seen him spending long periods in hospital.
But for every challenge he faces, he does it with “a quiet determination, a forgiving nature and fun-loving personality”. So much so, he has been nominated for a Special Recognition award at this year’s Yorkshire Children of Courage Awards (YCCA), which take place at New Dock Hall in Leeds on October 16.
Mrs Lancaster,43, of Stanley in Wakefield, said: “Toby captivates everyone he meets with his charming personality. He’s a whirlwind, and tackles every challenge with a smile on his face and bounces back.”
Toby has nine weeks old when he was rushed to Pinderfields Hospital in Wakefield with bronchitis. It was his brother’s third birthday and Toby had become very poorly, and stopped breathing.
He was transferred to the intensive care unit at Leeds General Infirmary, where doctors discovered the problem was far more serious than first thought - a hole in the middle of the four chambers of his heart. He went into heart failure.
What should have been a fairly routine surgery to fix it was made all the more risky when he developed pneumonia. But he fought his way through and eventually returned home after six months in hospital.
However, that was just the start of his health struggles. Two more major heart surgeries followed in 2009 and 2013, and in 2010, little Toby suffered a stroke, which caused a lasting weakness on his right side and mobility issues.
“The final heart surgery really gave Toby a new lease of life. Before it he was very, very blue - people would stop us in the supermarket to tell us our child was blue. The surgery gave him so much more energy”, Mrs Lancaster said.
So much so the family were heavily involved in the campaign to save the Children’s Heart Surgery Unit at the LGI, taking part in protests and drumming up support, and also raising money for the fund and for Martin House Children’s Hospice in Wetherby.
Toby, who goes to Kingsland School in Wakefield, joined his mother, dad Gareth, 41, and Callum, now 11, on a fundraising walk in Nidderdale. Mrs Lancaster has taken on a raft of challenges, including the arranging a ball, the Three Peaks and Leeds 10k, which the whole family took part in. It total, the family has raised around £10,000 for the two causes.
Through this, Toby’s health struggles have continued.
Last year he spent six weeks in a double leg cast after having surgery to reconstruct his dislocated left hip, and just last week the family found out he would need bladder surgery to correct an issue that was causing kidney damage,
Mrs Lancaster said: “The leg cast was particularly horrendous for Toby as although he can’t walk, he is very active and crawls around the floor and pulls himself up onto the settee.
“It is one thing after another for him, but he has a steely determination and a zest for life. Everytime we go to hospital, the staff remember him. He’s such a happy little boy.
“If there’s one person who sums up the Yorkshire Children of Courage Awards it’s Toby.”
The awards, which are now in their fifth year, were set up by the St James Place Foundation to raise money for local good causes while recognising the bravest youngsters in our communities.
The event itself includes a black tie dinner and is hosted by BBC Breakfast journalist Steph McGovern. Last year’s event raised more than £100,000 and tickets are still available for this year’s celebration at www.yorkshirechildren.co.uk