A heroic Cheshire dad has gifted his son a new lease of life by donating a kidney to him. When Luke Amos was 11-weeks old, he was rushed to the Countess of Chester hospital from his home in Ellesmere Port after he began to to scream and turn blue while playing in his rocker.
He was then diagnosed with ARPKD (Autosomal recessive polycystic kidney disease), a rare genetic disorder, and transferred to Alder Hey Children’s Hospital. 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 that ‘resembled frog spawn’ recalls mum Tori Amos, a 37-year-old hospital pharmacy technician.
His mum and dad, Tori and Carl, were left ‘heartbroken’ by his diagnosis. But after several weeks in hospital and back-and-forth trips by his parents, Luke was stable, so Tori and Carl took doctors’ advice to let him live as normal a life as possible.
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Speaking to Cheshire Live, Tori said: “When we first found out about his disease we were obviously heartbroken. You just assume you’re going to have a healthy, happy baby and when something like this happens it really makes you think about life in a different way.
“After the initial diagnosis and lots of sorting out of blood pressure medicines he eventually lived a pretty normal life with check ups every 6-8 weeks.
“We have adjusted well over the years and as I’ve said for the first ten years we pretty much just got on as everyone else. Yes, he had to take medicines and check ups and drink a lot of water but apart from that we were happy going on holiday doing normal things.”
Sadly, by the time Luke turned 10-years-old, his kidney function had declined significantly, causing him to have bad headaches and become extremely tired last year. Although she knew this day would come, Tori couldn’t help but burst into tears when his doctor broke the news that he needed dialysis.
“Last year his kidneys started to decline a lot quicker and by June we started to notice a difference in his energy levels and he was starting to suffer from headaches a lot more,” she says.
“He was still eating well and drinking well though, he’s continued to have an appetite throughout the whole time. By August it was obvious he was going to have to start dialysis as his bloods were getting worse and he was starting to look more tired and again lots of headaches.
“Despite all of this he never once complained he continued playing for his local football team and attended school full-time. When we were told about dialysis, we were upset as it was a scary thought but Luke wasn’t scared, he was so calm about it he didn’t mind.
“The first time seeing him on the machine was heart-breaking, I did shed a tear but we soon got used to it and it just became part of our life. Luke adjusted well and you could see he was feeling better from it.”
Carl, a 38-year-old traffic engineer, heroically agreed to donate a kidney to his son but 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.
In the meantime, Luke started dialysis three times a week in September last year. This included travelling to and from hospital, which takes around six hours.
Tori and Carl, who are constantly ‘on the go’, would fit taking Luke to hospital around their jobs and caring for their other son, who is now five years-old.
To prepare for the transplant, Luke underwent the seven-hour operation to remove both his kidneys in February. After recovering for the past few months, Luke received a kidney from his dad on May 5.
The pair are now at home and recovering ‘well’ and Tori says the family are looking forward to getting their lives back.
“Luke can’t play football or go swimming or do another of things his friends can do. It was more upsetting for us than it was for Luke, he was fine about it.
“To be honest if it wasn’t for the fact the staff on the unit are absolutely amazing it would’ve been so much harder. They work so hard and would do anything for Luke.
“The support we got from them all was incredible and honestly made our time there so much easier. Luke is home and doing really well.
“He’s up and about no pain relief and seems really happy. It’s a long road to normality but we’re on that road and look forward to hopefully getting our lives back and Luke being able to enjoy high school in September with his friends.”
Formed in 2000, PKD Charity is the only UK charity dedicated to improving the lives of patients, family members and caregivers dealing with the profound physical and psychosocial impact of polycystic kidney disease (ADPKD and ARPKD).
PKD is one of the most common life-threatening genetic diseases, affecting not only the kidneys, but also the heart, liver and brain. It is currently incurable.
ARPKD is a rare form of PKD that can cause a child to have poor kidney function, even in the womb, and can sadly result in death in the first month of life. For the children who survive, approximately one in three will need dialysis or transplant by the age of 10.
Although the prognosis for children with ARPKD has improved dramatically in recent years, further research is critical to improving their lives. Yet, the amount spent on PKD research is miniscule, whilst the burden and cost of healthcare for PKD patients and the social burden and costs on their families is disproportionately high.
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