ONE IN 100,000
Family of tot with rare condition raise funds to help others
A baby boy who faced major surgery at just days old after being diagnosed with a rare illness that affects one in 100,000 children looks set for a bright future one year on.
Gray Crone had to be rushed in for an operation just three days after he entered the world in July 2017.
The youngster, of Red House, in Sunderland, was diagnosed with tranche oesophageal fistula (TOF), a condition where part of the oesophagus is joined to the windpipe, making it difficult for infants to swallow, causing frothy, white bubbles in the mouth, coughing or choking when feeding and even vomiting.
The tot’s family are now hoping to raise cash and awareness for two charities which to help youngsters born with the condition.
Gray’s loving mum Danielle, 33, first became con- cerned just hours after he was born.
“I had a long labour and because he was a healthy weight at more than 8lbs, we thought he’d be OK,” said Danielle, also mum to Elsie, six.
“But while he was being fed, he was quite frothy and bringing up mucus, even though they said that was normal.
“After that though, he went blue and had to be taken for tests at Sunderland Royal Hospital.
“That’s when he was sent through straight away to the RVI in Newcastle in an ambulance.”
After being diagnosed with the condition, Gray underwent an operation at just three days old in which surgeons went in through his back to remove part of his oesophagus, which was then a dead muscle due to his condition and something which left him unable to swallow properly.
The oesophagus had to be unjoined from the windpipe and then connected to Gray’s stomach.
Following the op, Gray was put in intensive care for a week, but since then he has continued to make good progress in his recovery on a ventilator, but he is now leading a life as normal as other youngsters who are his age.
“It was awful seeing him like that while he was so little,” added Danielle, who is married to Gray’s dad Chris, 36, who works offshore.
“But we got through it and he is absolutely thriving now.
“He’s very prone to chest infections and has to have more pureed food than a lot of babies would.”
“Thankfully he should be able to learn to chew more when he is older.
“He has to have drinks nearby wherever he is but it isn’t too much of a problem.
“He will probably be under the care of the RVI until he is at least eight or nine, and if there are any complications, we will cross that bridge when we come to it.”
Throughout Gray’s life so far, Danielle and the family have been supported by TOFS (Tracheo-Oesophageal Fistula Support), a charity dedicated to improving the lives of all who were born with the TOF condition, as well as Team Evie, set up in memory of North Yorkshire tot Evie Johnston, who died aged just six months after
‘He went blue and had to be taken for tests at the hospital’ MUM DANIELLE
being diagnosed with a TOF and cardiac problems.
Now, they are taking on charity challenges to raise money for the organisations.
Danielle was due to undertake the Three Peaks walking challenge in Yorkshire alongside friends Kay Sampson, Karen Cook, Bethany Gray and Toni Coates over the weekend.
And Danielle will also tackle this year’s Great North Run next month, with her mum Beverley and sister Carly also taking part.
“Because the illness only affects one in every 100,000 children you wouldn’t think there are many TOF babies in the North East, but there are,” said Danielle, who works in a hairdressers.
“Through TOFS, a lot of the mums talk and help each other and it’s been lovely to have that support.
“If, for example, Gray has a coughing fit, which I’ve not seen him have before, I can post something on the website and other people will get back in touch.
“You get great feedback from them and it makes a big difference.
“We just want to make more people aware of the condition.”