Kevin McDonald, captain of Team Lucy D, is ready to get moving in the Detroit Walk for PKD. With the event just a few weeks away, we reached out to Kevin to learn more about his family’s experience with PKD once his daughter Lucy was diagnosed with ARPKD, how their team raises awareness and what inspired him to become a team captain:
Polycystic kidney disease was something that we had never heard of prior to June 2016. Our daughter, Lucy Diana, was born in early June 2016 after my wife was induced four weeks early for low fluid levels. Our first child was also born early (not with ARPKD) as the result of induction, so we had no reason to be concerned since we felt familiar with this routine already. However, Lucy Diana spent five days in the neonatal intensive care unit (NICU) as the result of her underdeveloped lungs. This experience alone makes any parent appreciate God’s gift of life and just how special and precious every child is. It wasn’t until one week after being discharged from the hospital that we had a visit with a nephrologist over some blood test concerns. We were not emotionally prepared for this visit. We thought we had already overcome our greatest fears, having watched as Lucy’s lungs grew stronger in the NICU and allowed her to come home.
It was at this visit with the nephrologist that we learned for the first time that Lucy Diana was born with ARPKD. Both my wife and I remained strong during the visit, but we had no idea just exactly what ARPKD was. Did she need a transplant? Was she going to outgrow it? Was she going to make it to her first birthday? Not one member of either of our families had ever had any sort of kidney issue (outside of my great grandmother, who passed from kidney failure at the age of 95).
We have learned so much over the past two years and are very fortunate that Lucy Diana has remained relatively healthy and strong since birth. Although she takes a handful of medicines twice daily, she has certainly developed the personality and attitude to fight ARPKD. Our family, including Lucy’s big sister Claire, are not the type of people that typically like to share every detail of our life either in person or on social media. We don’t like to bring up the topic to strangers, but we also do not try to intentionally hide her illness. Many people ask the same question: “Will she outgrow the disease?” It isn’t a comfortable conversation to have with anyone, but the best way to approach it is to remain positive and upbeat as you set the tone for the conversation.
This will be our third year participating in the Detroit Walk for PKD, which we use as our primary fundraising effort. We were very proud that Team Lucy D was the top fundraising team for the 2017 Detroit Walk for PKD, led by Lucy’s big sister Claire. Our family has discovered that people want to donate to a cause that they can relate to. Although it can be uncomfortable, the more personal and more information you provide, the more willing people are to donate to your cause. Although we have been fortunate to this point with Lucy’s health, we know what lies ahead and we will continue to keep our positive attitude. We will love our Lucy Diana and all our ARPKD warriors forever, and together, we will beat PKD!
The Walk for PKD is our signature fundraising event and 100% of each donation goes directly to fund PKD research. There’s still time to Walk with us this fall—create or join your Walk team and start fundraising today at walkforpkd.org!