Mother’s Day will be twice as significant for a Leeds tot who has battled serious health issues with the help of his two mums. Jonathan Brown reports.
The greatest Mother’s Day gift of all for the parents of Lyall Cookward is that he is still here.
Almost a year to the day since life-changing surgery that helped him breathe unaided, the boisterous five-year-old’s family is preparing to mark a date more poignant than most.
Lyall, who has Down’s syndrome, has been raised by his two mums in the face of a string of health problems.
The Chapel Allerton youngster, who has undergone 23 operations in his short life, has overcome heart failure, battled with a rare lung condition and spent two-and-a-half years relying on a ventilator to help him breathe.
He eventually came off the machine but relied on a tracheostomy – an opening in his windpipe – to breathe until doctors at Leeds General Infirmary offered to rebuild his collapsed airway using a graft of cartilage from his rib.
Steph Ward and Sharron Cook, Lyall’s mums, went ahead with the op on March 13 last year in the hope it would give him a better quality of life, despite warnings that the tot’s vocal chords and ability to swallow could be damaged.
After a week in hospital he woke up and uttered his first word, “mummy”, to the pair, and now, nearly a year on, has gone from strength to strength.
“When we were in hospital with Lyall only his health mattered, he had two parents that were absolutely committed to him,” Steph, 47, said. “Mother’s Day will be nice this year because he’s so well.”
March 15 has been a milestone each year for Lyall. His first was spent in hospital, where his two brothers were allowed to see him for the first time in nine weeks, and three years ago he was discharged on Mother’s Day.
Despite his progress, the troubled start to life that Lyall endured is something his family is only just starting to process having spent years tending to a tot who was never far from the brink.
Lyall suffered heart failure soon after birth and needed a life-saving operation, followed by further surgery in 2010.
Later he was diagnosed with a rare lung condition and spent seven months in intensive care before his parents were told he would need a ventilator to help him breathe, possibly for life.
His progress helped him come off the machine after two-and-a-half years but his fragile condition meant Steph and Sharron had to be by his side at all times in case he had difficulty breathing – they had to resuscitate him many times.
Sharron, also 47, explained: “It’s only now in the last few months that we’ve been able to reflect on it. Because we were dealing with it day in and day out it became the norm but there was such a fine line between life and death.”
Now walking around the family’s kitchen and living room, which used to be his makeshift bedroom, Lyall is settled in at Highfield Primary School, in Moortown, and playing as you would expect any other energetic child to.
After a hard day at school he settles down by the sofa and joins in reading a book with his parents at either side and later spends time with his brothers Dan, 19, and Max, 15. Life is seemingly normal.
The lively youngster shows no sign of trepidation in class, is a popular “livewire” at school and sings louder than anyone else during school assemblies. His sheltered past has had an effect however.
“It really hit us when he went to school how much his health has affected his development,” Steph said. “He’s having experiences at five-and-a-half that most kids, even those with Down’s syndrome, have had as toddlers.”
Conceding that his last birthday was the first year she was ever confident Lyall would see out another, she explained that the family is now looking forward rather than back, although the youngster’s health still remains an issue.
On Friday, the first anniversary of him waking from last year’s op, he will be back in hospital for his 24th procedure which will address an opening in his abdomen that he still drinks through.
But having faced countless health scares with Lyall, his parents are keen to help others on their journeys. They raised £1,500 for LGI last year and support parents through the Sunshine and Smiles Down’s syndrome support group.
“We worry about the future. He’s shown us how fragile life really is. We’ve had to go to so many funerals for children we know. You take a step back and think ‘he’s still here’,” Sharron added.
“It feels like we’ve nearly been there and I don’t think you every really come to terms with that. You just try and live a day at a time.”
Mark Down’s Syndrome Day 2015
Lyall Cookwards’ family is involved with the Leeds Down’s syndrome support network charity, Sunshine and Smiles.
To mark World Down’s Syndrome Day on March 21, the organisation is urging schools and workplaces in Leeds to wear yellow or wear a sunshine or smile next Saturday. Sunshine and Smiles has also arranged a fundraiser featuring the Singing Hands group and Roundhay Ukelele Band at the Village Hotel, in Headingley, on the day.
For information visit www.sunshineandsmiles.org.uk.