Tragically, Maddy’s older brother was KILLED by the same disease less than two days after being born
A BABY whose deadly disease made her look eight months’ pregnant has been giving a life-saving kidney transplant, thanks to her dad’s donation.
Maddy Rbykin was in urgent need of an emergency transplant, having been born with an enormous stomach due to a rare condition called Polycystic Kidney Disease (PKD) – the same condition which had tragically killed her parents’ first child just 36 hours after birth.
The tiny tot, who is now two, had kidneys THREE TIMES the size of an adult’s when she was born on November 7, 2013.
For the first 18 months of her life, American toddler Maddy was completely drained of energy, sleeping up to 18 hours-a-day, with a bulging belly and throwing up daily.
Doctors feared she might die – until her deli owner dad Paul Rybkin, 38, was identified as a donor, and she had the life-saving operation on January 19 this year.
Maddy’s parents, from New Jersey, were unaware they were born carriers of the recessive gene for PKD, which causes cysts to develop and can lead to kidney and liver failure, until they fell pregnant with son Nathanial.
Tragically, he died just 36 hours after birth – on August 5 2013 – and doctors warned the couple there was a one in four chance future kids could also develop the condition.
Stay-at-home mum Karen Rodas, also 38, said: “The chances of any of our babies surviving, if they were born with it, was very low.
“Nathanial didn’t stand a chance. Just 36 hours after his first cry brought him to life, he was gone.”
The high school sweethearts, who are also parents to Jackson Zarsky, nine, from Karen’s previous relationship, and Penelope, one, still wanted to add to their brood.
Karen said: “When I fell pregnant again, we were both over the moon.
“Then, at our 20 week scan, they found Maddy’s kidneys were enlarged – a sure-sign of PKD, just like Nathaniel. My heart sank.
“I was determined we didn’t lose our baby to the deadly disease again.”
The family would not consider abortion, and found a PKD expert doctor in Philadelphia.
On November 7, 2013, they travelled to the Children’s Hospital of Philadelphia for a routine 33-week scan, but Karen was induced into early labour after doctors discovered Maddy was at risk of becoming tangled in the umbilical chord.
After 12 hours Maddy finally arrived, her stomach alarmingly bloated, and she was kept in hospital for seven years – finally heading home on Christmas Eve.
Despite regular hospital visits, tubes and oxygen treatment – Maddy seemed to be doing well for the first year-and-a-half, until her kidneys suddenly failed and the need to operate became urgent.
Karen said: “With Paul and Maddy, two of my most precious souls, going under the knife, my nerves were a wreck.
“I kept thinking: ‘What if something happens to them both? How will I cope?'”
Thankfully, both operations were a success, and Maddy recovered.
Karen added: “Daddy’s kidney has saved our little girl.
“Now, she has boundless energy. Her massive tummy now just looks a little bit rounded and she is a happy and healthy two-year-old.
“She laughs so much, big belly laughs. And she feels good, which was something she wasn’t used to.
“She will need another transplant in 25 years, but that feels like a lifetime away.”
Paul said: “We have been on a rollercoaster – but any father would have done what I did, donating my kidney to Maddy. It’s part of being a parent.
“Now we are on a high and can watch Maddy grow up as a happy and healthy little girl.”
To follow Maddy’s journey, click here.
