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Hazel's story

Cornish couple, 28-year-old factory worker Daniel and 25 year-old Aria, a student and author, were thrilled at the arrival of their second child, Hazel. And then came the shocking news that their baby has an incurable disease, and their world suddenly turned upside down. Aria tells their story in her own words.

"Hazel was born weighing a very chunky and healthy 9lb 13oz. She is my second child and, with her brother's birth being traumatic, we were very pleased to have a smooth birth and seemingly healthy baby girl. There were no issues during the pregnancy and every scan went by smoothly. We were excited to be a family of 4!


Loving family - Aria, Jago, Hazel and Daniel

She slept, she ate, she was a very happy and easy newborn!

When she was 3 months old, however, we noticed something wasn't right. Her urine was very strong smelling and her little tummy was expanding and turning a shade of blue! We took her for multiple GP visits but were told that - other than slight constipation - she was fine.

And then aged 4 months, in the early hours of a normal November day she suddenly began struggling to breathe. We were rushed into hospital and she was placed on oxygen.

When we made doctors aware of her swollen and 'blue' tummy, within a matter of hours she had undergone scans, x-rays, blood tests, blood pressure testing and blood sugar testing.

She was diagnosed with bronchitis and Kawasaki Disease, which explained redness to her hands, feet and mouth, high temperature and fluid around her heart. However, this did not explain her urinary symptoms or swollen tummy.

The doctors continued to look over her results.


Baby Hazel with big brother, Jago  

I will never forget the moment the doctor came in to our room, my daughter attached to so many beeping machines, completely dependent on them. He broke the news that there were masses on Hazel's kidneys, which at that point could not be ruled out as cancerous tumours. Our world shattered.

Soon after, however, it was confirmed that the masses were not tumours but cysts, multiple cysts covering the surface of both kidneys. Not only were the cysts in high numbers but also her kidneys were the size of a teenager, which explained why her tummy was so swollen.

Hazel had Polycystic Kidney Disease and would continue to suffer with the condition until her kidneys failed and she was eligible for a transplant. We couldn't believe it; our healthy baby girl would have to live with an incurable condition that we had never heard of!

In fact we'd not heard of a baby having kidney disease. Judging by what we saw in the media we believed that kidney disease was something a person developed from leading an unhealthy lifestyle (of course we now know different).

Hazel was sent home on lots of medications and we were referred for genetic testing. A few months later we received the results, which confirmed that both Daniel and me carry a faulty gene that caused Hazel to develop ARPKD (Autosomal Recessive Polycystic kidney Disease), the rare form of PKD. This meant that any children we wanted in the future would also be at risk of having the disease.

We blamed ourselves, each other, the world. We cried and got angry and mourned the lives that we had expected to have with Hazel.

We Googled too much, were fed false information and scary facts...

Hazel Oxygen
Hazel v PKD

Hazel, who at the age of 3 is already proving she's a 'fighter'!

And then we discovered the Polycystic Kidney Disease Charity UK. A place of safety and comfort. The Charity gave us the information we needed not only to come to terms with our daughter's health but also the newly learnt information that meant we had to rethink having more children.

Since then, we’ve raised money for the Charity through our Facebook page, @HazelVsPKD. We have taken part in fundraisers, raffles, sold handmade items and each time one of my books sells I donate a portion directly to the Charity.

Hazel is now 3 and I'm not sure I can explain in words the personality that this little girl holds. She is stubborn, independent, boisterous, and strong. She has not for a second let her condition hold her back. She is hitting her milestones and experiencing everything possible.

Of course she takes medications multiple times a day, has a limited diet and is in and out of hospital for both appointments and long stays. Her kidney function is reducing faster and faster and she will need dialysis/transplant in the near future.

But right now she is just Hazel. This disease doesn’t define her and she makes everyone know it! She has never made a fuss; in fact she thinks she is the hospital ward celebrity!

We are so lucky to have such a brave little girl"

  • 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.