‘I could never be more in love with somebody than this wee boy’
Brave mum Donna and son Logan battle against all the odds
Thirteen-year-old Logan Quinn is one of hundreds of children who have, for the past year, smiled through lockdown with the support of CHAS’s virtual children’s hospice.
Here, proud mum Donna explains why she couldn’t love her inspirational little boy any more than she does and how, together, they are working through his bucket list.
Mum Donna Quinn shares a remarkable bond with the special little boy she waited for so long to love.
That’s why, when he was only 11-years old, she drew up Logan’s bucket list to ensure they share enriching experiences and make lasting memories in the precious time they have left to together.
The arrival of Logan came as a blessing to former jewellery trade manager Donna and her husband, who had tried for some time for a baby.
It wasn’t until he was ninemonths-old that the couple began to worry something may be wrong with Logan. “Sometimes he would recognise people and other times he would ignore them,” explained Donna.
“We took him for an initial investigation, as we thought his hearing or vision was off.”
Suspecting he may have cerebral palsy, paediatricians referred baby Logan to the neurology department at Yorkhill Children’s Hospital.
“Soon after, he developed epilepsy. Nobody could explain why Logan was the way he was. He had seizures at a year old,” continued Donna.
“They showed in different ways. He had lots of different movements we didn’t realise were seizures. Also, he would just go and stare into space. That was him having ‘absences’ – a type of seizure. They got that under control with medication, and he kept really well.
“We were referred to ophthalmology because we questioned his vision. He was registered blind at the age of two. His vision is very limited. His actual sight is okay, but it is how the signals are sent back to the brain.”
Logan – who has a rare genetic disorder – was unable to sit unaided and developmental strides, such as gaining strength in his legs, were milestones that went unmarked.
“We learned he was a much different wee child than we had planned,” said Donna, whose considerations shifted from which colour of pushchair to buy, to what was the best wheelchair for her little boy’s complex needs.
By the time he was three-anda-half, Logan’s weight, at only 10 kilos, was a cause for concern. Feeding was taking longer and he was struggling increasingly with swallowing.
While undergoing tests at Wishaw General, Logan – who is non-verbal – contracted respiratory syncytial virus (RSV). He was ventilated and transferred to the intensive care unit at Yorkhill.
Donna recalled a “long threemonths of different treatments,” within which Logan was ventilated four times.
“We thought we had lost him,” his doting mum adds.
With the extreme risks associated with operating on such a poorly little boy, consultant neonatal and paediatrics surgeon, Graham
Haddock, decided to take a chance on Logan.
He was to undergo gastrostomy surgery, during which a small opening is made through the skin into the stomach or intestine and a plastic device called a button is fitted, through which food and medicine flows.
To stop him vomiting, Mr Haddock performed a procedure known as fundoplication in April 2011 – a surgery that strengthens the valve between the oesophagus and stomach to prevent acid from backing up.
“I had taken a healthy boy to hospital for tests in January – and he was now on 10 different medications a day, including morphine and oxygen,” said Donna.
“We didn’t know whether the surgery would be successful and what type of wee boy we would be bringing home. That was when neurologist Dr Mary O’Regan asked if I had heard about Robin House.”
The day prior to Logan’s surgery, the family paid an initial visit to CHAS’ Robin House in Balloch, with Donna saying she thought a hospice would “be worse than the hospital,” which had been traumatic enough for the family.
She added: “I expected the hospice to be very medical, with unhappy, sick people and lots of machines. It could not have been further away from that.
“As soon as we walked through the door, it was an amazing atmosphere. I’ve always likened it to a hug. It was as if they had met you a hundred times before, because they are so warm and generous with their love.
“You have no way of knowing what they are dealing with in the background, because they are so focussed on you. There are no uniforms. It was like a ray of sunshine.
“Logan was getting surgery the following day and we knew there was a high chance he would not survive the operation. We didn’t know what his result would be, or if we’d be going back to the hospice for end of life care, or for me to learn how to do his feed and his medicine, or how to hold him again.”
Ten days after surgery, Donna brought her boy back to Robin House, where they stayed for five
days. Milk feeds were replaced with pureed food more suitable for a child of his age, Logan came off the ventilator and began to gain strength.
“I had a bit of post traumatic stress. My emotions were all over the place. It was clear just how close we came to losing him,” said Donna.
With all rooms having a door that leads on to the garden, the family – including Donna’s parents who visited their grandson on the second day of their stay – were able to sit on a picnic blanket, with Logan in a sun hat and sunglasses, soaking up the spring sunshine.
Nursing team lead Yvonne Caie arranged home care for when Donna needed to go out. And the Quinns were even able to attend a family wedding, with a nurse sitting at the table alongside guests to tend to Logan’s needs.
Adaptations were also made to their Kilsyth home to make it open-plan, and hoists, tracking and ramps were installed.
The pressures of caring for a child with complex needs took its toll, and Donna split from Logan’s dad eight years ago.
It was in 2019, when Logan suffered a major gastric bleed, that Donna once again feared she may lose her son.
“Instead of focusing on the bad things that had happened – like the loss of a really close wee friend who also went to Robin House – I thought we had to change our mindset, draw up a bucket list and plan things that we’d never done before,” she said.
Robin House helped arrange a sailing trip for Donna and her son, during which charity able2sail decorated the gangway of the boat with banners and hailed Logan ‘Sailor of the Year.’
A Robin House nurse accompanied Donna and Logan to music festival TRNSMT, he went to his first stage musical, and mum and son travelled unaccompanied for the first time to Eastbourne to visit family.
The respite she receives at Robin House, says Donna, has been a life-saver for her sanity, giving her time to have her hair done, see friends, or spend time with Logan doing the things they love.
“He is so heavy now that the only time we get to have a proper cuddle is when he’s in the hydrotherapy pool, weightless,” she said.
While he was being changed in the middle of the night in January 2020, Logan – who has brittle bones – rolled over and cracked his femur, resulting in a two-week hospital stay.
Again, the Robin House team came to Donna’s aid, teaching her how to hold and change her son while he was in a spica cast, which was not removed until lockdown was imposed and restrictions called a halt to his much-needed physio and home care assistance from Robin House.
In response to the pandemic, CHAS launched its virtual children’s hospice service, which includes Zoom visits from the Clown Doctors, music therapy from Nordoff Robbins, arts and crafts parcels, story-telling sessions and silent discos – Logan’s favourite activity, during which his mum wears make-up, earrings and a sparkly top, and joins her son under a disco ball in the kitchen to wave glow sticks.
Although Logan comes out of shielding next week and will be able to resume hydrotherapy sessions at his school, Craigalbert, Donna admits she’s “nervous of stretching that umbilical cord a bit further.”
She can’t wait to escape the confines of North Lanarkshire for a road trip in the new van in which 13-year-old Logan – who is prone to aspirating – can sit up front with his mum in case he needs suction.
“I just want to maximise the time we have got,” she said.
“As I have a large family, Logan is usually always surrounded by love and noise from his cousins, aunties and uncles and his Gran and Granda fussing over him. This time, as we come out of lockdown, its time itself that we are both looking forward to the most, as this is the most precious gift of all.
“This is our prime time. We are desperate to get back to the seaside. He loves feeling the breeze on his face in Prestwick or Troon, getting some sun about us and lots of fresh air.
“Logan is very content despite his health. Although he is nonverbal, he can still be cheeky with smiles that melt my heart.
“At home, he loves cuddles and you reading to him, especially Julia Donaldson books, with rescue Springer Spaniel Molly by his side on the couch. He loves to help me bake and we have been joining in with live bake-alongs during lockdown.
“He also loves music and Disney musicals. Our house is never quiet.
“He amazes me with his developing skills of working the ‘eye gaze,’ where he controls and makes choices of what comes on the screen by what he looks at.
“For a boy registered blind since he was two, this amazes me. He has also recently been fitted for a trike, which will be fantastic physio for his legs after his fractured femur last year, but also great for his love of the outdoors
“As a parent, you don’t get a set of instructions. There’s no training for this. I am so inspired by Logan and what he has gone through. I was told to celebrate his fourth birthday as his last. He has defied the odds and said: ‘I’m not giving up. There’s plenty of living in me.’
“I could never be more in love with somebody than this wee boy.”
z Donna and her family – including her eight-year-old grand-niece, Beatrice, in Torquay – have raised around £2000 by taking part in the CHAS 10,000 steps challenge. To donate and help children with life-shortening conditions and their families, visit www.chas.org.uk/donate
I thought we had to change our mindset, drawupabucketlistand plan things that we’d never done before Donna Quinn