Caroline was diagnosed with ARPKD/CHF (autosomal recessive polycystic kidney disease/congenital hepatic fibrosis) when she was a few days old, (our 2nd child). All we knew at that moment, when they told us, was that most babies don't live past 30 days. So we ventured into a new world of studying EVERYTHING we could about this disease. Four years later we had Aaron (our 3rd child). He was diagnosed at 18 weeks pregnant with suspected ARPKD. He was born at 33 weeks and spent 3 weeks in the NICU.
Both Caroline and Aaron are doing very well at the moment. They are both on medication due to blood pressure issues and the prognosis is by the time they are between 10-12 years old they will need a dual transplant...kidney and liver. In the meantime, we are at doctors and hospitals a lot. ARPKD affects 1 in 20, 000 babies with many of them not surviving, so needless to say there are very few of them. Our children have a 25% chance of having the disease, a 50% chance of being a carrier, and a 25% chance of no trace at all. Will, big brother, has been checked, is healthy and unaffected by this disease.
Since Caroline was diagnosed, we have been working hard to support organizations to raise awareness and funds to help find a treatment to halt the progression of the disease, and one day find a cure. Caroline is one of the sweetest most caring and strong-willed children you'll ever meet. She's also extremely brave. I have no doubt her little brother will follow in her footsteps. This has been an extremely huge adjustment and challenge for our family and we couldn't have done it without all the help and support from you!
We have amazing friends and family! Will, Caroline and Aaron are truly blessed!
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