Karen and Daniel Stapleton

PKD Charity trustee Karen whose son Daniel was diagnosed with ARPKD at just over 18 months old, shares their very special story.

Here, Karen explains in her own words how it felt discovering Daniel has ARPKD (Autosomal Recessive Polycystic Kidney Disease) and how the family have managed since. ARPKD is a rarer form of PKD, affecting 1 in 20,000 live births, boys and girls equally.

“I’m Karen Stapleton and this is my little boy Daniel. I’m a Trustee for PKD Charity and became involved with the charity shortly after Daniel was diagnosed with ARPKD. 

Daniel’s ARPKD wasn’t picked up in utero, although I had some pregnancy complications and he was a little premature at 34 weeks and spent a few weeks in the NICU. When he was 10 months old we took him into hospital with a suspicious looking rash and at that point his large tummy was identified as a concern. After some scans we found out that his kidneys where larger than they should be. We were referred to the Evelina and ARPKD was raised as the likely cause and it was clinically diagnosed when he was just over 18 months. He had very high blood pressure, like many ARPKD little ones, but this is now under control (although it took quite a few months for us to get there) and he is doing really well. We were initially shell shocked and then devastated by the diagnosis and it took a while to get our heads around it. We were so worried about what the future would hold for him, how he would manage his condition and whether he would need a transplant someday. We sometimes still have those wobbles but when I am in that place it is my wee man who pulls me out of it. We have a little man who is so loving and mischievous and doesn’t let anything stop him.

The information and support provided by the PKD Charity has been really encouraging. There is a lot of research going on which will hopefully help with future treatments and it has been invaluable to know that there is a community there of people who have experienced what we are going through. The care that we have received from the specialists at the Evelina and Kings has also been excellent. 

Daniel took a big step this month in starting kindergarten and I am feeling very positive about his future and that although he has ARPKD it is just a part of him and doesn’t define him.”

To discover more about ARPKD please see here

Here’s to Daniel and Karen! It’s an absolute honour to share their story, and to have a trustee like Karen on the PKD Charity board.