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Jaxson's story

Jaxson's story

On the first anniversary of donating a kidney to her son when he was just two years old, brave mum Jess shares some of their PKD jouney so far.  

"Jaxson was born in February 2020 with Autosomal Recessive Polycystic Kidney Disease (ARPKD), which meant that he had non-functioning kidneys from birth and was on dialysis for the first 2 years of his life.

Jaxson in hospital

The condition was detected during a 4D scan I had when I was 27 weeks pregnant. The scan showed that I had no amniotic fluid, that Jaxson’s kidneys were abnormally large, and that he was unlikely to survive. This was devastating for me and my husband Darrell, as you can imagine, but we decided to hope and pray that he would make it.

Jess and Darrell's wedding 

Jaxson arrived at 36 weeks and after only a quick glance of him, he was whisked away to the neonatal intensive care unit. I didn’t see him until a few hours later when he was attached to a ventilator, which was such a shock.

At only 24 hours old had his first surgery, to insert a PD catheter for dialysis. We were told the only treatment option for Jaxson at this age was dialysis and then as he got bigger, we could discuss options around a kidney transplant. However, there was a long way to go and as Jaxson’s kidneys remained abnormally large, they would have to be removed once he was strong enough for surgery. 


Jaxson's birthday!

There were many complications over the next few months and we had many setbacks. He spent nearly 4 months in hospital and had to have a kidney removed before he was stable enough to be allowed home.

It was amazing to finally bring him home and be back together as a family. A month later Jaxson was back in hospital to have his 2nd kidney removed, which weighed nearly 1.5kg!

To be considered for transplant Jaxson had to reach 10kg, which would allow enough room in his body for an adult kidney to be transplanted. In 2021 we were advised that Jaxson had reached the magical weight and we could move the process along for organ donation. Both my husband and I were tested and I was identified as the best match.

Jess and Jaxson

After 756 days on dialysis the transplant went ahead and Jaxson got his new kidney on 22nd March 2022. He’s progressed so much since then and took his first steps when he was 2.5 years old!

He's also starting to eat, drink and talk, which he didn't do before his transplant.

I feel so incredibly lucky that I was a match for Jaxson - Giving him the gift of life has been my greatest achievement. I'm forever grateful to all the amazing surgeons, consultants, doctors and nurses that have been involved in Jaxson’s care over the past few years".

We wish Jaxson, Jess and Darrell a very happy 1st kidneyversary!

  • Autosomal Recessive Polycystic Kidney Disease (ARPKD) is a severe genetic disorder occurring in approximately 1 in 20,000 live births, affecting boys and girls equally.
  • ARPKD can cause a wide range of problems, including: underdeveloped lungs, which can cause severe breathing difficulties soon after birth: high blood pressure (hypertension): excessive peeing and thirst: problems with blood flow through the liver, which can lead to serious internal bleeding: a progressive loss of kidney function.
  • Around 1 in 3 babies will die from severe breathing difficulties during the first 4 weeks after birth, and approximately 1/3 will need dialysis or transplantation 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.

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