Loving parents from Walkern will not have their dear 10-year-old son Lennon Ruffles with them as a pageboy when they walk down the aisle on their wedding day after he sadly passed away last Thursday. Little Lennon Ruffles had an array of extremely complex medical conditions, and needed round the clock care.
He was under nine different medical teams at Great Ormond Street Hospital, and attended Keech Hospice in Luton when possible for much needed respite care.
He had a deaf blind diagnosis and suffered excruciating pain in his tummy.
Lennon was the subject of a fundraising campaign which raised £22,421 over the past three years to help pay for equipment including a wheelchair, a special needs bike, a soft padded play area at home, and an eye gaze computer.
Mum Nikki Lancaster and dad Ian were planning to have Lennon alongside them at their marriage.
After his death last Thursday, Nikki paid tribute to her brave son and praised Keech Hospice and the doctors who have treated him, by posting an incredibly moving article in her online blog.
It describes the family’s last hours with their son.
She wrote: “Tuesday August 1, 2017, Lennon, Isla and Florence spent their first day at CHIPS summer playscheme. The girls there were amazing and happy to have Lennon there.
“He had a lovely day, playing with his sisters, moving around in his walking frame and playing at the sink and in the sensory room.
“He came home and watched his favourite Yo Gabba Gabba! show on the television while holding my hand and slapping my arm.
“In the evening, Sian our continuing care nurse arrived. We bathed Lennon, did a full bag and dressings change. Lennon loved his baths – he often crawled or lead us to the bath. He was also known to climb into the bath when it was empty and lie in it. He loved to just stand at the taps and put his hands and face under the running water.
“Lennon always was a true water baby. The vicar came to talk to Ian and I about our wedding, and Lennon played on his floor mat happily with his ocean drum and Argos catalogue until bedtime at 8.30pm.
“Isla and I got into bed with him and he was so happy. Massive smiles and real belly laughing. It was so lovely, and in hindsight we realised he was saying goodbye to Isla – the sister he was totalled besotted with.”
At 10.15pm Lennon began suffering seizures and had to be rushed to Stevenage’s Lister Hospital.
Doctors managed to stop the seizures with some IV medication but Lennon remained unconscious.
He quickly deteriorated overnight until 9am on Wednesday morning when he was put on life support.
After being taken to Addenbrookes Hospital in Cambridge for emergency surgery, Lennon was kept on life support while Nikki, Ian and their two daughters prepared to say goodbye.
Nikki wrote: “We desperately wanted to get Lennon to our children’s hospice, Keech. The girls at Keech, absolutely adore Lennon and I always hoped that the end would be there or at home and not in intensive care. The doctors kept telling us that he wasn’t stable enough to travel and we would risk losing him on the journey. A risk neither of us was willing to take.
“At 2.30am on Thursday morning the blood pressure medication he was on wasn’t enough and they pumped him with more and fluid just to keep him alive. So at 3am we made the decision not to prolong the inevitable any longer. Lennon had gone, I think he left us before we left Lister.
“We got to spend the next three hours saying our goodbyes. It wasn’t long enough. But all the time in the world wouldn’t have been enough.
“They dressed him in his page boy outfit – he looked so smart and my heart shattered again knowing that he will no longer walk me down the aisle when we get married.
“We are lucky Lennon spent time at Keech over the last eight years and had built up relationships with everyone there and two of our continuing care nurses who looked after Lennon at home now work there.
“It feels so comforting to be there, close to Lennon – like a great big hug. The Keech girls are also taking care of us, making sure we eat and drink, helping us with funeral plans and making sure we are as involved as we want to be.
“Words cannot begin to describe the pain we are feeling, it hurts to breathe.
“Every morning I wake up for the first second, I forget that Lennon isn’t here anymore and then it hits me like a bus. It feels like I’m losing him all over again.
“The thought of spending the rest of our lives without Lennon seems unbelievable. He was such a huge part of our family and for the last 10 years my whole life has revolved around Lennon.
“I gave up everything for my little soldier – my career, going out with friends, money, holidays. And I don’t regret that at all. I would live the last 10 years over and over again if I could.
“We are so incredibly proud of our little soldier. The odds were always stacked so highly against him right from the minute he was born, yet with every single step of his journey he fought so hard to stay alive. Some times were more difficult for him, but he always bounced back. He was like a cat with nine lives!
“We will treasure every single second of the last 10 years and all the amazing memories we were able to make with Lennon in our lives.”
Ian said he wanted to thank all the people who have helped care for Lennon and fundraise for him.
Asked what advice he might give to other families who have children with complex conditions, he said: “We had a huge team of supporters. We were so touched that people came forward to help.
“You just have to keep fighting.
“It’s been a tough ten years and a there have been some lows, but the highs have been incredibly high.
“We would still say they were the best years we have ever had.
“You have to use as much support as you can get and let in as many people as can help.”
To read Nikki’s full blog go to https://livingwithlennon.com.
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