Conor Durkin O’Brien’s Celebration of Life

Conor Durkin O’Brien was a special teenager who once won the Liverpool Echo’s Courageous child award, while his beloved Mum was a Liverpool Echo “Mum of the year”. Now, four years after Mum Julianne Durkin O’Brien passed away, Mum and son are together again.

Conor from Huyton, was born with the most severe type of muscle wasting SMA (Spinal Muscular Atrophy), but he won the hearts of many people just a few months after he was born in 2003, when after being told he would not survive past his first twelve months, his family worked to raise funds for a trip to USA in the hope that the treatment only offered there, could help prolong his life.

Mum Julianne died suddenly in her sleep on August 14th 2014, she was just 32, but she had seen Conor prove those Doctors wrong.

Conor died on November 9th 2018 in Alder Hey hospital, he was fifteen years and five months old. Conor left behind a heartbroken family, including his Dad Phil O’Brien, his eleven year old brother Cameron and his Nan Julie Durkin, with hundreds of family members and friends packing into Prescot Parish Church for a service of celebration of his life.

There is a card on the mantelpiece of Nan Julie’s home which says it all, “My stairway to Mummy in Heaven” and “My Conor, Welcome to Heaven Mummy’s Warrior. Safe in my arms where you belong“.

Speaking on behalf of the family about her brave Grandson, Julie 61 says, “What Julianne always said was so true. Conor has SMA, SMA doesn’t have him”

“Conor was a one off, even as a baby, he seemed much wiser than a newborn, he stared into your soul whenever you spoke to him as if to say, “I’m taking everything in for future reference”

“Conor was very caring and he was a sensitive soul, but he also had a wicked sense of humour! he would educate me, sitting there typing and communication on his PlayStation. Two years ago he told me that Donald Trump was a ‘misogynist’ and then he explained what one was.

Conor however, liked and respected the opposite sex and, just weeks before he died he told his Nan that he wanted to find true love and have two children.

In the end though, his body just became worn out and, in her eulogy, read out by her daughter and Conor’s Auntie Danielle, Julie wrote, “When I saw him lying there, so peaceful and serene, I knew then, that Conor had fought the fight.”

“All I can say is the strength that came into my soul was his Mum, talking through me. I assured him, that if he was tired and weary, it was okay to go into a lovely long sleep and go to meet his Mum. Or if he wanted to wake up, he could. We were all there and it was up to him – as always, his word was law!.”

Julie wrote, “His light dimmed for a split second and then shone as he went to his Mum and they hugged like never before…..four years and three months of hugs to catch up on…..Goodnight, Big Guy. We all love you beyond the moon and stars. Your impact on this world in the fifteen years and five months that you were here is something that no one could have ever dreamed or imagined. Your Dad and Cameron and each and everyone of us are going to have the biggest reality check at a future without you in it.”

Conor was a keen student of animation and he was looking forward to studying the subject at college. A big fan of the American Looney Tunes collection of comedy cartoons. Fittingly, Julie’s touching tribute for her Grandson ended with the words, “That’s all folks”

In 2003, shortly after Conor was diagnosed, his family were told that Conor would not live beyond twelve months. Parents Julianne and Phil heard about a leading respiratory specialist in New Jersey USA, John Bach, who had pioneered treatment of SMA and had patients in their 20’s.

The people of Liverpool rallied round and enough money was raised, and Julie says, “We were able to buy the machines he needed to keep our boy with us. Conor thrived and lived life just as he would have, due to his Mum and Dad’s tender, loving care, he grew into this character that hadn’t been seen before – and was reading and writing by the age of two. He defied the odds, got his wheels at the age of three, went to nursery and to school and excelled at everything that he had a passion for.”

“Julianne always looked at what Conor could do and not at what he couldn’t do”

Heartbreakingly, Julianne having given her oldest son so much strength, died suddenly in her sleep in August 2014. Julianne was thought to have suffered a major or prolonged seizure due to epilepsy which was diagnosed earlier that year.

Julie says, “the bond Julianne and Conor had was unlike any other I have ever seen, I simply can’t describe how strong it was. Conor was very subdued when his Mum died. We would ask him, “Do you remember when your Mum did this?”. But he didn’t like to look back. It hurt him too much. But now they are together again”

Their legacy adds Julie, is a powerful one and their presence lives on, in the family’s continuing campaign for a cure for SMA.

“It’s too late for Conor, but I would literally beg and plead with the ‘powers-that-be’ to ensure that when a cure is found, it is given to everyone who suffers from SMA.”

Julie also wants to pay tribute to all those at Alder Hey Children’s hospital who nursed and treated Conor at various times throughout his life. Conor was able to live at home thanks to a round the clock care team from Alder Hey.

Conor had a tracheotomy when he was aged three because of severe breathing difficulties and was diagnosed with sepsis in June this year.

“I want everyone to know how grateful we are to everyone we came across at Alder Hey” says Julie. “From day one, they were great with him, and for 15 years treated us all like Royalty and family friends.

”Conors Life Celebration will take place at 3pm on Monday 19th November at St Mary’s C of E Parish Church, Vicarage Place,Prescot..L34 1LA. Then onto St Helens Crematorium,Rainford Road,St Helens,Wa10 6DF.

🙏🏼💔#reunited #mumsboy Con is resting at DEBBIE BENNETT INDEPENDENT FUNERAL HOME 31 HIGH STREET.PRESCOT L34 6HE

No flowers please.

However contributions for his family would be much appreciated to help and support them at this difficult time 💔

You will never know how much we value each and every single thought, message, call and prayer 💔

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This funding page was set up for the benefit of Phil O'Brien and Cameron O'Brien, by Julie Durkin and Paul Woods.