The grandson of Bruce Hay has told Santa what he wants this Christmas – for his little brother suffering the same hereditary condition that killed the rugby legend to “get well forever”.
While most three-year-olds will be looking for a sack of toys under the tree this weekend, Chris Cornet says all he wants this festive season is for Lyle to win his brain tumour battle.
The toddler revealed his wish this week when Santa made a special visit to the Cornet family home in Loanhead – after learning one-year-old Lyle was too poorly to visit him in his grotto.
Lyle has a particularly aggressive tumour which doctors are unable to remove. His family live each day as if it is the last and worry this could be his last ever Christmas and want to make as many memories as possible.
Lyle has to undergo chemotherapy sessions at least once a week, making his immune system very weak. His mother Lyndsay, 24, had arranged to take both her sons to see Santa at Dobbies garden centre in Loanhead but had told staff they might not make it if Lyle was too poorly.
When big-hearted bosses at the store heard about the brave toddler’s battle they decided he was such a special boy that Santa, Mrs Claus and his elves should visit him at home to make sure he did not miss out.
Mother Lyndsay, 24, said: “They had no idea about it. I got them both at the front window to say we were waiting on someone and then all of a sudden Santa appeared with his big red sack and was waving as he walked up the path. The boys were beside themselves. They were giggling and smiling and shouting ‘There’s Santa’.
“Santa told them it was his busiest week but that when he heard about Lyle being so ill he wanted to come and bring a gift in person and get a hug.
“Lyle pulled his beard and giggled at him. Then Chris got a hug and was asked what he wanted for Christmas. We were all in tears when he said ‘I just want my brother to get well forever, please’.”
Lyndsay, who has had to take leave from her work as a nurse to care round the clock for Lyle, said the visit had made the family’s Christmas.
She said: “We don’t get to do too much as Lyle cannot catch any bugs, so has to stay away from busy areas. If he gets ill, which happens often, we have to go to hospital where he needs special care for days as he can have seizures and fits and needs to be hooked up to oxygen and given all sorts of drugs to keep him going. He has also developed pneumonia before and we have to be so careful.”
Lyle’s tumour is so large it affects his sight and he has poor vision in both eyes. He also has a hole in his heart and has had to have his stomach stitched as he had trouble swallowing and doctors feared his stomach contents could go into his lungs, which could be fatal. As a result he is fed every day through a tube inserted into his stomach.
Lyndsay said: “He has all sorts of things to deal with and we are known by almost every department at the Sick Kids hospital as we are in and out of there all the time. It is tough but what keeps us going is Lyle, he is always smiling. Even on his worst days to hear him giggle keeps me and his dad, TJay, going.
“We don’t know how long we will have him for. It might be days, it might be a few years. That is why we try and make every day count. He has only had one other Christmas and he was too young to realise about Santa. This year he gets it – so for him to get a VIP visit was just magic. The boys had a ball.
“Although he is enrolled in a nursery, Lyle has only been once as he has been too ill or weak to go. So he misses out on all the build-up to Christmas lots of other kids get. That made this visit even more special.”
Lyndsay’s father Bruce Hay – who played for various Edinburgh clubs, Scotland and the British Lions – died of a brain tumour aged 57 in 2007. Both Lyndsay’s boys have suffered tumours. Chris had a benign tumour removed last year but Lyle’s is growing and will never be able to be taken out. He has undergone DNA testing and doctors believe he has inherited a faulty gene which has led to his condition.
It was in January this year – when Lyle was just nine months old – that he was taken to hospital with an infection, and, after he started shaking on the left side of his body, that his parents learned about his chronic illness.
An MRI scan revealed he had a large tumour around his brain which doctors say will require round-the-clock care for life. Brave Lyle has started to crawl, but his parents have been told he will probably never be able to walk as his leg muscles are so weak.
Doctors were looking to give him radiotherapy to shrink his tumour but have now decided against this. Instead, he is undergoing 18 months of chemotherapy. His first dose of the drug did not work and he has already been changed on to a different drug to see if it can stop his tumour growing further.
The family have to wait until February for more tests to see if the latest drug is being effective. If not, doctors say they will try Lyle on another drug – which would mean starting a new 18-month course from the beginning.
Doctors are also unsure if he will be able to talk, other than say a few words. He currently has two words – “Mummy” and “Aye” – but he loves to hum to songs and is enjoying learning new festive tunes.
Lyndsay, the late rugby star’s only child, said: “It’s so sad watching the boys go through this. I was 15 when my dad died and I remember seeing what his tumour did to him. Now I am seeing the same with my boys.
“In a way, seeing what happened to my dad has made me a bit more ready for this challenge. I know to make every single day count. We did that with dad and he was so brave and strong and we will be too. The boys are such fun they bring such joy that we try and forget Lyle is so, so ill.
“When Chris asked Santa to make Lyle better it brought home just how much this affects him too and how much his wee brother means to him. We are getting him an iPad this Christmas and a few other wee things, and we will do all we can as a family to make his real wish come true – ours too – by keeping Lyle as well as we can.”
The Cornets are now looking forward to a large family gathering at their house this Sunday, when Lyndsay will cook for 12 people including her mother, Lynda, who helps her daily.
Lyndsay said: “Santa was good enough to bring gifts for us all, including lovely hampers. We are so grateful.
“I have had to take leave from work and TJay is an apprentice joiner so money is tight. So all the goodies will be much appreciated over the next few days.
“We might not have much but as long as we have both our boys, that is all we need. Being able to have Lyle at the table alongside Chris, who just dotes on him, is the best present we could ask for.”
And looking ahead to 2017, the family have already started fundraising to adapt their home so Lyle can be moved from his upstairs bedroom to a new room on the ground floor which would better suit his needs.
Lyndsay said: “Lyle can have bad fits and is very unstable so it is safer if he stays on the ground floor rather than being upstairs where he could fall down stairs. We need him in our sight all the time.
“We want to build a lovely wee room for him with lost of sensory objects with changing colours, what is his favourite thing. He can spend ages watching lights change and he squeals with joy.
“We don’t know what the future holds and are living each day as it comes. To look at Lyle when he doesn’t have his tubes in you’d never know he was so poorly. He is all smiles. He is our Christmas, and everyday, angel.”
Dee Rutherford, deputy store manager at Dobbies Edinburgh, told how staff were determined to make the Cornets’ Christmas when they heard about Lyle might not be able to see Santa.
She said: “As soon as we heard about Lyle, we wanted to do everything we could to give him the ultimate Christmas experience.
“Every child should have the opportunity to meet Santa and his Elves and the team were really excited to make the trip to Lyle’s home.”