Shaemus was born on the 6^th May 2017 with a rare genetic condition called Jeune syndrome, also known as thoracic dystrophy. The condition causes a small chest and ribcage and he also has short limbs. It restricts the growth of the lungs and he has been on home oxygen since birth and has regular physiotherapy, inhalers and nebulisers. Shaemus also has Caroli disease of the liver and stage 5 kidney failure.

He started peritoneal dialysis (PD) at 18 months old, and now aged three, he has PD for twelve hours every night in the comfort of his bedroom. He has a twelve-hour PEG feed through the night, and regular check-ups at a variety of hospitals to maintain his health.

The path ahead

The impact of Shaemus' health has been devastating and at times, very hard to comprehend. His treatment is at the moment keeping him stable, but we face multiple challenges in the future.

Shaemus needs to be 12kg in weight and 90cm in height for a kidney transplant. He currently weighs 11kg and is 81cm in height. We worry a great deal about the major operation he faces and whether his respiratory issues will affect him in theatre and afterwards.

I will never forget when Shaemus had his PD catheter fitted at Alder Hey Children's Hospital in Liverpool. We had many meetings with renal and respiratory consultants, to discuss how we would cope with the anaesthetic and whether it was going to compromise his lungs and breathing.

We were so worried, Shaemus was baptised in the hospital before the operation went ahead. After an anxious wait, and to everyone's surprise, he did amazingly well.

Looking forward

We are closely monitoring Shaemus' liver, oxygen requirements, and recording his weight and blood pressure every day. At the moment, he is on fluid restriction, but he loves water and ice cubes, so limiting these has been difficult for him to understand. For us, it is heartbreaking to see him so upset when all he wants is a drink.

We have learned to take each day as it comes and that vulnerable children are more resilient than we think. Shaemus continues to surprise us and no matter how difficult the surgery or how bad the outcome, he has always pulled through.

We wouldn't have got through the extremely difficult times without the love and support of the NHS staff at Alder Hey - Shaemus sees them as a second family. For others in this situation, we say 'stick together' and accept as much help and support as you can. I learned the hard way and struggled for a long time.

We all deserve a medal!

Shaemus' big brother Sean (aged nine), has been amazing. He helps out and does everything he can to make Shaemus happy - he loves him so much. Sean even raised over £800 for the NKF in 2019 by doing the Choctober challenge!

Dad Kieran has struggled over the last few years. He is self-employed and has been forced to juggle being with Shaemus and maintaining our household income as I am Shae's full-time carer.

For me, Shaemus' mother, I am terrified of the future. I have experienced kidney failure twice in my family; once with my brother and then with my mum. My brother sadly lost his life in 2008 in a road traffic accident, and we also lost my mum in February this year due to kidney and respiratory failure. Whilst I'm still learning on the job, I would like a role within renal care at some point in my life.

Covid-19

Shaemus is amazing. He makes us laugh and he loves being a clown. But the coronavirus pandemic has had a huge impact on our family. It is a scary time. Kieran has been forced to give up work and it has been difficult to entertain the children. However, we plan to stay at home in our bubble until safer times.

Never give up

Shaemus has given us thousands of special memories and we treasure everything possible. We were told he may not be able to do most things and that there was a possibility he wouldn't live beyond two years old. Yet, here we are, and he has met all his milestones for his age, despite having spent most of his life in hospital.

The most important message I have is to never give up. Shaemus is determined, strong and brave, and faces everything with two fists held high like a warrior. He has so much love and affection for us and is our inspiration in life. Whilst we have a long way to go, we will never give up!

By Sarah Lincoln

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