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Luke's story

It's every parent's worst nightmare to have a poorly child. For Tori and Carl Amos, when 11-week-old Luke began to scream and turn blue while playing happily in his rocker one day, they were suddenly faced with a very different future to the one they’d envisaged. 

Tori and Carl on a rare night out

Little could they have known, as they’d looked forward to the arrival of their first-born, of what lay ahead for him: emergency treatments, dialysis, and surgery to remove both his kidneys to make room for a transplant. There had been no hint of any problems during pregnancy. 

Yet within a matter of hours of being rushed to the Countess of Chester hospital and then Alder Hey Children's hospital, their world turned upside down. On noticing his stomach was slightly distended, doctors carried out an ultrasound scan where it was discovered Luke’s kidneys were covered in small cysts. “They resembled frog spawn” recalls mum Tori, a 37-year-old hospital pharmacy technician. 

Luke was diagnosed with Autosomal Recessive Polycystic Kidney Disease (ARPKD). 

ARPKD is a rare form of PKD, usually diagnosed in babies and young children and occurs in roughly one in every 20,000 live births. It can cause a wide range of problems, including underdeveloped lungs, an enlarged liver and progressive loss of kidney function, resulting in 1 in 3 needing dialysis or transplant by the age of 10.

Unlike ADPKD, parents of children with ARPKD don’t have the disease themselves because they have one normal copy of the gene and one faulty copy. They’re often called ‘carriers’. About one in every 70 people in the general public is an ARPKD carrier.

Despite all he has to endure, Luke never complains! 

Luke’s blood pressure was also dangerously high, and it took several weeks in hospital and 5 different types of medication to get it under control.

Fortunately Tori and Carl could be on hand for their baby by staying at Ronald McDonald house, the accommodation for families of seriously ill children at Alder Hey Children’s Hospital. 

Though back and forth for monitoring, once Luke was stable, Tori and Carl took doctors' advice to let him live as normal a life as possible. 

The family enjoyed holidays and days out over the years as Luke grew into a fun loving, sporty little boy who is always smiling. Much to his parent’s relief, he’s also developed a big appetite!

"A lot of children don't eat well with this condition but luckily Luke has always been able to eat what he wants. He's always had a bit of a distended stomach because his kidneys were enlarged but he’s never let that get in his way" explains Tori.

The couple also welcomed a second son, Archie, who does not have ARPKD.

Sadly, by 10-years old Luke’s kidney function had declined significantly, causing him to have very bad headaches and become more and more tired.

Although she knew this day would come, Tori couldn't help but to burst into tears when his doctor broke the news that he needed dialysis, “I just didn’t want his life to stop” she explains.

Brotherly love

While Carl, a 38-year-old traffic engineer heroically agreed to donate a kidney to his son, Luke needed surgery to remove his diseased kidneys before the transplant could go ahead - by this stage they had grown to twice the size of healthy kidneys. 

With no other option in the meantime, Luke started dialysis 3 times a week in September 2021. Including travel to and from hospital this takes 6 hours each time, which means Luke misses some of school on dialysis days. Tori and Carl - who are constantly "on the go" - fit taking Luke to hospital around their jobs and caring for Archie, now aged 5.  

It takes a lot of planning, and emotional and physical energy, leaving very little time for them as a couple. But despite all the demands, Tori stresses they’re a very resilient family, “We just crack on with it!”.

Luke, who wants to be a Youtuber when he grows up, adapted to dialysis very well. Despite being unable to do the things his friends can do like swimming "he never moans" Says the proud mum.

Luke ARPKD dad small 2

Father and son - a strong bond

Thankfully they are very well supported by the team at Alder Hey, who lavish attention on Luke. She has nothing but praise for all they have done for her young son. "The team work really hard and they are rushed off their feet all the time but yet nothing is ever a bother”. When Luke got MRSA in November and was extremely poorly for 3 weeks, they bent over backwards to help him through this difficult time. 

To prepare for the transplant, on February 7 2022 Luke had surgery to remove both his kidneys; a long stressful day for the whole family.

Luke ARPKD TX 400x400

Luke after receiving his new kidney

Since then we are delighted to report that Luke received a new kidney from his heroic dad Carl at Manchester Children's Hospital on 5 May.

Several weeks on, father and son are doing well, and although Tori admits it's still a stressful time says that Luke's kidney function has improved dramatically and he continues to eat well, gain weight and grow! 

Whilst it may be a while before he regains full strength, we're hopeful this wonderful gift from his dad will allow this smiling little boy to live the life he deserves, and give his mum and dad some respite from all the years of worry. 


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Transplant, ARPKD, Living Donation