Conor's Story

When Conor’s mum Julieanne asked her paediatrician if her baby son would ever walk she was told the devastating news that he was unlikely even to be able to lift his own head.

Julieanne was so upset she had to leave the room. Her baby boy, who had seemed so healthy at birth, had been diagnosed at just a few months old with Spinal Muscular Atrophy.  

Conor, who was floppy and unable to move, had the most severe form of the condition – 80 per cent of children who have it die before their first birthday and the other 20 per cent usually do not live to the age of two.

Julieanne describes the next two days as a blur. The family was in complete shock. It was like a period of grieving for the family with the realisation that there was no treatment or cure for Conor.

Determined to do all they could to help Conor, Julieanne and her husband Phil flew him to the USA to see a doctor who specialized in the condition. Following his advice they used a ventilator to help Conor breathe via a mask overnight. Despite having to buy this themselves and getting little training they persevered and over time learned the best way to ease their son’s symptoms. Conor continued to do well but almost died shortly after his first birthday when his breathing stopped. The doctors managed to save him but from then on he had to be fed through a tube. The little boy struggled on with numerous episodes of cardiac arrest and respiratory failure until he was three years old when the decision was taken to give him a tracheostomy to insert a tube in his throat with the aim of improving his quality of life.

It was a devastating decision for his mum and dad – as it meant Conor would never be able to speak again. The day before his operation the family made a video of him talking.

It was a long road with Conor spending the next 18 months in intensive care and the high dependency unit but his mum feels the resilient little boy came out with his life changed for the better. Julieanne was quickly trained in tracheostomy and ventilator care and eventually the family came home with carers three nights a week.  Things were going well but the birth of Conor’s little brother, Cameron in 2007 put extra pressure on the family. Julieanne and Phil were exhausted. By July the next year Julieanne was unable to cope and had a complete breakdown resulting in her admission to a psychiatric unit. Conor was admitted to the Transitional Care Unit (TCU) at Alder Hey Hospital.  

It has been a long dark tunnel for the family – and nobody has a magic cure for Conor – but the help and support they are receiving from WellChild nurse Elaine and the TCU at Alder Hey offers a ray of light and hope.

Julieanne is now back living with her family and the great news is that WellChild Nurse Elaine has co-ordinated Conor’s discharge from the unit so he is now living with his family at home. He arrived the day before his sixth birthday which he was able to celebrate at home.

Julieanne says that the TCU has been a life saver for the family. She describes the staff as ‘our angels’ and cannot speak highly enough of the relaxed and fun setting that the unit offers.

The family was delighted when Elaine took up her role as WellChild Nurse in 2008 as she had previously cared for Conor as a hospital nurse.  She became a key person in Conor’s care. Julieanne now considers Elaine a good friend and a much needed familiar face for the whole family who think she is fantastic. Getting Conor home from hospital was a complex process but Elaine took care of all of this.

Julieanne said: “Without Elaine, Conor’s discharge would be long and drawn out, she is so professional and has an amazing relationship with all of the children and parents. This means that Conor has so much trust in her - I don’t know where we’d be without Elaine.”

Julieanne believes that it is Elaine’s input that has got the family where they are today and enabled her and Phil to get their life back together.