Why I Walk

Why I walk…

Why do you walk for PKD? Read what motivates others and tell us why you walk.

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Nathaniel and Madeline: ARPKD warriors

Rodas family

Karen and Paul participate in the New Jersey Walk for PKD to raise awareness so that future generations of children will have a better way to manage their disease.

When Karen Rodas’s beautiful baby boy arrived three weeks early, she remembers, “He was all kidney.”

It was halfway through her pregnancy when Karen and her fiancé, Paul Rybkin, first heard of polycystic kidney disease. A routine ultrasound at 20 weeks showed that their baby, Nathaniel, had enlarged kidneys. This is when he was diagnosed with autosomal recessive polycystic kidney disease (ARPKD), a relatively rare form of PKD. Following his birth on August 4, 2012, the lack of amniotic fluid and Nathaniel’s enlarged kidneys left him with very little lung tissue. Doctors tried to give him oxygen and other interventions, but sadly, there was nothing that could be done for him. After 36 hours of watching him suffer, Karen and Paul decided to let their little boy go peacefully.

During this difficult time, the couple made the decision to donate Nathaniel’s healthy tissue and organs to other children in need. Karen and Paul wanted to try to help keep other parents from going through what they just endured. It was a decision that provided comfort as they grieved for their son. “It gave us hope and closure to know that although he is no longer with us, Nathaniel would bring joy to others and his legacy would live on through saving another child’s life,” Karen said.

The following spring, Karen and Paul were thrilled to discover they were expecting again. At 22 weeks, however, they learned their second child would receive the same diagnosis as Nathaniel. “We were devastated. We thought she was going to suffer the same way Nathaniel had,” Karen explained. “The doctor said she had no future and we should consider abortion, which wasn’t fair to her or us.”

Karen ultimately decided she didn’t want to go down that route, and looked elsewhere for care during the high-risk pregnancy. “We found a doctor who was more optimistic. He had treated many ARPKD patients. He told us there was hope and that she could have a full, meaningful life.”

Madeline, their baby girl, was able to produce amniotic fluid only until her 33rd week in utero. At that point, fearing a cord accident, the doctors decided to induce Karen early. Madeline spent the first 7 weeks of her life in the NICU at Children’s Hospital of Philadelphia. “Being in the hospital and watching her hooked up to breathing machines, IVs and other medical equipment brought back difficult memories of Nathaniel,” Karen shared. “Needless to say, it was a frightening time.” Karen and Paul were able to take Madeline home for the first time on Christmas Eve, 2013.

Madeline Rodas

Throughout her hospital stays, Madeline maintains a great attitude.

Now 21-months old, Madeline is a daily inspiration to her parents. She has been hospitalized four times since birth, the longest of which was two weeks. Throughout her hospital stays and countless doctor visits, where she is prodded and stuck over and over again, her parents say she maintains a great attitude. She is very small for her age, about the size of an average 12-month-old. She is on multiple medications for support and in need of a kidney transplant. In spite of the obstacles she faces, her parents say she is a cheerful baby.

“She can’t walk or talk; she’s up at night crying and feeling pain three or four times every night; she throws up, but she doesn’t give up. When she falls down, she gets up. She tries to crawl. She finds a way to get where she wants to go. Through it all, she is always smiling. She is always upbeat.” Karen says. “She does whatever she can – she could just sit there and do nothing, but she doesn’t, and that’s what makes me proud, to see her push through and be a fighter.”

Madeline Rodas

Madeline is always smiling and upbeat. Her determination is what motivates Karen and Paul.

Paul shares, “When you see Madeline reaching milestones – taking steps, grabbing toys, laughing – her determination is what motivates us.”

Recently, the couple found out that Paul qualifies as a donor match for Madeline. Karen says she and Paul have felt guilt in knowing they gave the recessive disease to Madeline, but he would be honored and proud to be their daughter’s donor. Paul was relieved to discover the wonderful news. “Obviously, the closer to the bloodline you can get, the better. To know she can get the best match possible was a great, overwhelming feeling,” Paul says.

The family also has the 2015 New Jersey Walk for PKD to look forward to.  “The reason we walk is to bring awareness. We didn’t know about PKD before Nathaniel. Research needs to happen and raising money is how it will get done,” Karen says. “We hope that future generations of children will have a better way to manage their disease.”

Family and friends will join the family as they attend the Walk in October. “It’s great to know they care enough to get involved, that they want to work to get word out that this disease exists and needs attention,” Karen said of her support system.

To other parents of babies born with ARPKD, Karen wants to say, “Take it one step at a time. It can be overwhelming to think about all the things that can go wrong. Just try not to read what can happen to them or what their lifespan could be. Enjoy them and the time you have them… Don’t focus on what can go wrong – be happy about what is going right.”


A patient with a pep in her step

We just feel normal

“We just feel normal.” That’s what Bella Ingersoll wants others to know about her and other PKD patients.

Bella was merely a few months old when she began suffering severe urinary tract infections. After performing several tests, doctors determined she had ADPKD. “None of our family members that we know of have polycystic kidney disease,” said her mother, Stephanie. “Bella’s nephrologist told us there was a 10 to 15 percent chance of spontaneous occurrence, and she just happens to be one of those few.”

Despite the diagnosis, PKD has never swayed Bella’s natural optimism toward life. Now 7-years-old and full of spunk, Bella and her team – appropriately named Team Bella – will unite to Walk for PKD in Oklahoma for the fifth year in a row. “My cousin is on my team every single year,” Bella shares. She says she is also accompanied by other family members including “my mothers, my aunt Danna and my nana.”

Bella says that she believes “(The Walk) mostly means ‘support.’ It helps a lot of people with PKD and it also is good for education about PKD. The reason we’re raising money is so they can find a cure for a lot of other people who have PKD as well.”

By participating in the Walk, Bella is proud to be able to support those who struggle with PKD like her. “It feels good to help them. People can fill your bucket and you can fill other people’s buckets almost every day.”Walk for PKD
This year, Bella wants to raise $250 all by herself. She has some plans in store to help her reach her goal. “One year, we did a lemonade stand and we will definitely be doing that again. I made the lemonade all by myself,” Bella recalls. Stephanie explained that in the past, she and Bella have set up shop at a few local events selling the refreshing beverage while handing out informational fliers about PKD and sharing Bella’s story. Each year, the mother and daughter duo raises hundreds of dollars to donate to the Foundation.

In addition to raising money and supporting others at this year’s Walk for PKD, Bella looks forward to the exciting kid-friendly games that will take place at the Oklahoma Walk for PKD.

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Offer to donate kidney leads to PKD diagnosis

Amy Manelli

Amy Manelli holds her daughter Quinn while with her mom, Laurie Geiger, at the 2013 Chicago Walk for PKD.

My name is Amy Manelli. I was born and raised in Northbrook and currently live on the North Side of Chicago with my husband and our two daughters, Quinn and Nicole.

I first learned about the PKD Foundation after attending the Chicago Walk for PKD with my family about 10 years ago. At the time, my father was dealing with the full impacts of polycystic kidney disease and I was just beginning to show the early signs.

In his late 20s, my father had been diagnosed with high blood pressure — a typical first indication of PKD in an otherwise healthy, young individual. After years of declining kidney function, he went on to have complete kidney failure in 1997 at the age of 46.

Shortly after, I was tested to see if I would be a good match to donate a kidney for him and I discovered I had this genetic disease as well. Our family had not talked about the disease and so he had not paid much attention to it in his younger years.

However, after kidney failure and discovering one of his children had the disease, he decided it was time to become educated and find out what he could do to support the effort in finding a cure — probably not in time for himself but hopefully for me and others.

My father was on dialysis for nine months. He later had two successful kidney transplants, the first in 1998 and the second in 2008. After his second transplant, he was feeling the best he had in many years. He always used to say that he never realized how bad he felt until he felt good again.

In late 2010, he was diagnosed with an aggressive form of cancer. After being on immunosuppressant drugs for 12 years, he passed after a short three-month battle with the disease.

Losing my dad was very difficult for me. At the time, I was also pregnant with my first child. Consequently, my perspective on life changed significantly. I decided to do all I could to support the PKD Foundation in finding a cure for polycystic kidney disease, not only for myself but for my children and for my sister, who had also been diagnosed.

Thankfully, my personal health has remained good. My kidney function has started to slightly decline recently as I move into my mid-thirties, but I still feel well and I am able to live an active lifestyle.

The Chicago Walk for PKD is not only a good opportunity for me to raise funds in support of the PKD Foundation, but it is a great chance to meet other families and friends impacted by this disease. It has been a wonderful experience to be able to share stories and memories.

I am thankful for the generous financial support many family members and friends have given the PKD Foundation in support of me and in the hopes of finding a cure.

For more information about the annual Chicago Walk for PKD or the PKD Foundation, visit http://www.pkdcure.org/connect/chapter-locations/chicago.

This story originally appeared in the Chicago Daily Herald


See gus go

Gus Jaska

Texas team walks for ARPKD and their
little hero

Texas team walks for ARPKD and their little hero … Amanda’s daughter, Lola, was born with a cleft lip. When she became pregnant again, she and her husband wanted to make sure everything was okay. So at 18 weeks into her pregnancy, she went in for a check up. “They told me my baby’s face looked good, but the technician’s face just dropped as he looked at the ultrasound images,” says Amanda Jaska. “They rushed me back so I could speak to my doctor.” The next few minutes turned into weeks and months of anguish and stress for Amanda and her family. “My doctor had tears running down her face,” she explains. “She told me my baby had ARPKD and his kidneys were filled with cysts. She said there wasn’t much hope. “She said I could carry it as long as I wanted to, but that these babies usually die when they’re born. I couldn’t believe what I was hearing.” What should have been a time of joyful anticipation and preparation became a torturous wait for the Jaska family. “It was such an emotional time,” Amanda recalls. “We were talking to priests and planning memorials. “We were preparing ourselves for the worst.” Miraculously, Amanda carried her baby boy for 37 and a half weeks. He was born by C-section because his stomach was too distended for a traditional birth. And the miracles didn’t stop there … “Other than his big belly, he looked perfect,” Amanda says. “They took him to the NICU, but he didn’t need any feeding tubes. He didn’t need a ventilator.” Two and a half years later and Gus is running circles around his big sister!

See Gus Go

Since Gus was born, the whole family—along with their friends and other supporters—has participated in the
San Antonio Walk for PKD.

Since Gus was born, the whole family—along with their friends and other supporters—has participated in the San Antonio Walk for PKD. Lola and the other children under 12 have fun running in the Penny Kids Dash. “The PKD Foundation is such a godsend,” Amanda says. “It’s where I find all the information I need, and we want to support the work they do for families like ours.” Amanda says living with ARPKD has been a difficult adjustment for the whole family, but they are grateful for every day with Gus. His energy and perseverance inspire them to keep going. “When we walk, our entire team wears t-shirts that say ‘See Gus Go,’” Amanda says. “They have his picture on it. “His big sister wears her PKD Walk t-shirt year round,” Amanda laughs. “She likes to tell people about her little brother.” This year, Amanda’s team is giving young children another way to help fight ARPKD and PKD— “Piggies for PKD.” “We’re working with the community center in our town to host a fun day with a bouncy house and other games for the kids,” she explains. “When the kids bring their piggy banks in, we’ll roll their coins and give them a tax receipt. “It’s a big deal to them, and I think kids like to feel like they’re doing something, too. “The Walks are so fun, and it’s awesome to meet other families going through the same thing. We’re looking forward to it.”


Energetic Walk for PKD captain grows her team every year

Theresa and Sal

Team “Sal’s Pals” was started in 2008 in honor of Sal Raguso.

Find out what makes the leader of Chicago’s Sal’s Pals such a success… Theresa Raguso is fired up about the Walk for PKD. Especially when it comes to rallying her team and raising money to support research and awareness. Since 2008, the team she named in honor of her dad—Sal’s Pals—has been fighting PKD in the Chicago Walk. “People are curious and will ask questions about PKD when you’re fundraising, and some will give right then and there,” she says. “But other people forget or just get busy with their lives. You have to keep it in their faces and remind them why it’s so important.” Theresa reminds people with frequent emails and posts about her Walk on social media. She wants other Walk captains and Walk participants to know persistence pays off. “By being consistent, you’re showing people you really care about the cause—fighting PKD—and that has an effect on people,” she explains. Supporting the PKD Foundation and raising awareness of PKD have been important causes to Theresa for a long time. Her father has PKD and the disease has affected other generations on his side of the family, as well. Her uncle, great-uncle and each of her great uncle’s three sons, also have PKD. “My great-aunt had us all do the Walk for the first time in 2005,” says Theresa. “This was right around the time my great-uncle received his transplant and my family began learning about the PKD Foundation. I really started getting involved after that.”

Sal's Pals

“Don’t be afraid if your team is small and
doesn’t raise a lot of money the first few years.
You’re still part of the end goal of finding a
cure, and that matters!” – Theresa Raguso

Through her involvement with the Foundation, Theresa has found a way to feel like she’s making a difference for her loved ones … and raise awareness of a disease that isn’t as well known as other chronic diseases. “I meet so many people who have never heard about PKD, so it’s always encouraging to see so many new faces at the Chicago Walk every year,” she says. “The chance for people with PKD to get together and share experiences with others going through the same thing is another invaluable experience the Walk makes possible.” Theresa has gained a lot of experience as a Walk captain and has some advice for walkers and teams just starting out. “Don’t be afraid if your team is small and doesn’t raise a lot of money the first few years,” she shares. “You’re still part of the end goal of finding treatments and a cure, and that matters! “The longer you keep at it, the more people will support you—never give up.”


Team Riester’s Kickin’ PKD’s Kiester


Team KU – The Renal Avengers


Team Rock Chalk Blaylock


Team Polly Waddles


A heart of gold

sami-lynn

A Heart of Gold stopped beating, Two shining eyes at rest. God broke our hearts to prove He only takes The Best. God knows you had to leave us, But you did not go alone ~ For part of us went with you, The day He took you home. To some you are forgotten, To others just the past. But to us who loved and lost you, Your memory will always last.

About Sami Lynn
In October 2008, my husband Jason and I found out that we were expecting our first child. In March 2009, we found out that we were having a girl, due mid July 2009. At that same appointment our doctor said that he thought she had PKD. Two days later we went to see the specialist who told us that there was no sign of anything wrong with her kidneys. I continued to have appointments and in June 2009 my husband and I went back to the specialist. At this appointment, he informed us that I had no amniotic fluid and now he saw something wrong with her kidneys. I was sent home to pack a bag and then head to the hospital. My wonderful and beautiful daughter Samantha “Sami” Lynn Muldoon was born at 12:53 p.m on Tuesday June 9, 2009. She was six weeks and one day early, weighing 5 lbs. 4 oz and 17 inches long. She was transferred to the Children’s Hospital in Los Angeles. A couple of hours later, I went to the NICU to watch them load her up to be taken to Children’s, hoping that she would make the trip and make it through the rest of the night. Sami spent the next 140 days at Children’s with us driving down every day to see her. During her stay there she endured a lot. We found out that she had ARPKD. She had surgery at 13 days to put in her dialysis catheter, surgery to have her first kidney removed at 15 days, surgery to remove her second kidney at 58 days, CT scans, MRIs, MRAs, EKGs, ECHOs, EEGs, SIN-T scans, an upper GI scan and another surgery at 129 days to have her g-tube put in. Through all this she had been ventilated three times and it was found that she had had three 3 strokes. I got to hold her for the first time on July 7, 2009 at 28 days old. On Tuesday October 27, 2009 Sami Lynn finally got to come home. For the next 9 months, she was in and out of the hospital, even spending her first birthday in the PICU. On August 9, 2010, Sami Lynn was again taken to the nearby hospital for slowed, deep breathing. Within 45 minutes of getting to the hospital, Sami stopped breathing. They quickly tried to intubate her, but she went into cardiac arrest. They did CPR for 20 minutes before finally using the defibrillator on her to jump-start her heart. Once she was stable and her stats and heart rate were normal, they called Children’s to have her transported there. Even though all tests showed no damage, it was obvious that Sami Lynn had some brain damage from the lack of oxygen while trying to be intubated and from going into cardiac arrest. Each time they took her off her pain and sedation meds she would have uncontrolled leg movements and twitching, she would clench up her arms, hands and shoulders and she would stop breathing and make the machine work for her. We always told Sami Lynn that when she was tired and done fighting we would understand and we would make sure to make her comfortable. On Sunday August 15, 2010, I asked Sami three times what she wanted and all three times she stopped breathing and made the machine work for her. That day, my husband and I had to make the hardest decision a parent should never have to make. We decided that we didn’t want her to suffer anymore and we decided to do what we believe she wanted: to pull her ventilator tube and let her body do what it wanted to do. That afternoon, we called family and friends and told them to come down to the hospital tomorrow to say their goodbyes. At 6 p.m. after almost everyone had left my husband and I said our goodbyes and told her how much we loved her. At 6:38 p.m. we had the doctors remove her ventilator tube. My husband and I sat on the bed with Sami Lynn between us so that both of us could hold her. Within 10 minutes Sami Lynn had flat lined. The doctor was about to pronounce her when she took another breath and continued to breath. Her Dad and I laid in her bed with her until 12:10 a.m. My husband watched as Sami Lynn’s stats and heart rate started to drop. He bent down kissed her forehead and told her that it was okay and that she could go be comfortable. Sami Lynn never took another breath. She died very peacefully in her Dad’s arms on Tuesday August 17, 2010 at 12:15 a.m. at 434 days old.

About the Walk for PKD and PKD Foundation
I became involved in the Walk for PKD and the PKD Foundation after Sami Lynn passed away. After she passed, I started doing more research on PKD to see what I could find and how I could help other with ARPKD. I came across the PKD Foundation at that point and joined the Virtual Walk (we didn’t have a walk in my area at the time). I couldn’t imagine not have the PKD Foundation a part of my life now. Being asked to be the Seattle Walk Coordinator this year was a blessing for me. I have always tried to do what I can in honor of Sami Lynn and I thought that this would be the perfect way. I always believed that Sami was sent to me for a reason and after she passed, it was my job to pass on her strength and her ability to teach others. Being asked to be the Walk Coordinator was my way of passing on the information that I learned and to be able to learn more about PKD to pass on to others as I believe Sami would want me to do. Raising money for the PKD Foundation through the Walk is important to me because it means having the funds to help find a treatment or cure. Every dollar I raise makes me feel that when a treatment or cure is found, I was a part of that. And, hopefully one day, I will be a part of making sure that no other child has to go through what my Sami Lynn had to go through. The PKD Foundation has had a big impact on not just me but my family as well. It is a time for us to help others. My husband and I raise our 11-year-old nephew (we have had him for 9 years) and this is a great way for him to learn to help others and also to remember his sister. The Foundation has brought us together more as a family when it comes to PKD and Sami Lynn. The Foundation has also been a great teacher to me in regards to PKD. Before Sami Lynn was born, I didn’t know anything about it. In fact, I didn’t know there was such a thing as PKD. With the Foundation, I was able to learn what PKD was and where I can turn to for help and support. To me, the PKD Foundation is one big family there to help and support one another.

In closing
One of the biggest things that I learned through all this is not to take your life for granted. Do what you can when you can; don’t wait. Sami had a hard 14 months but through it she went to the zoo, went to a Dodgers game, went to Disneyland and California Adventure and got to watch her big brother play soccer and baseball. Sami taught us to live each day and fight for what we want. I love you Sami Lynn. A Heart of Gold stopped beating, Two shining eyes at rest. God broke our hearts to prove He only takes The Best. God knows you had to leave us, But you did not go alone ~ For part of us went with you, The day He took you home. To some you are forgotten, To others just the past. But to us who loved and lost you, Your memory will always last.


Steppin’ for Stephie

Stephie is a bright and bouncy 12 year old girl, an avid soccer player and swimmer. Stephie embraces life with a colorful enthusiasm and perpetual smile that brightens the world around her. On the outside she is every bit a normal middle-schooler; playing sports, acting in the school plays, and clowning around with friends. Watch the video above to hear why she participates in the Walk for PKD with her team, “Steppin’ for Stephie”.


Connecting with others fighting PKD – gaining strength

Audrey

“Audrey’s Angels” will be crossing the finish line in the Atlanta Walk for PKD.

When their daughter, Audrey, was diagnosed with ARPKD, Courtney and her husband Charles had never even heard of the disease. “Our nephrologists told us about the PKD Foundation,” Courtney says. “It was through the Foundation’s online resources that we were able to gain a better understanding of our daughter’s disease and find comfort among others who are living, and have lived with, PKD.” This year, Courtney will be leading “Audrey’s Angels” across the finish line in the Atlanta Walk for PKD. She took part in the Tampa Walk last year. “To walk and raise money for PKD research gives me hope,” she shares. “I feel I’m supporting a cure and doing something for Audrey that might make a difference in her future health.” At five months old, Audrey suffered a severe urinary tract infection. At nine months, she received an official ARPKD diagnosis. Courtney says their main concerns, now that Audrey is two, are keeping her blood pressure in check, monitoring the growth of cysts in her kidneys and preventing urinary tract infections. “Our involvement in the annual Walk for PKD connects us to others who are fighting similar battles against PKD, whether personally or as caregivers,” Courtney continues. “Through their stories, I gain strength. I pray Audrey will one day find her own strength through these same people and resources.

Audrey

Audrey, now two years old, was diagnosed with ARPKD at nine months.

“With all the uncertainty this disease has created for us, I can’t imagine how she’ll feel. I hope these Walks provide a community of people she can reach out to when she has her own questions and concerns about PKD one day.” Courtney also participates in the Walk for PKD to show her support and concern for others facing the same challenges ARPKD has created for her family. “My participation shows I care about the millions who’ve lost someone to PKD, those on dialysis, and the many others who are watching, waiting and dealing with the daily side effects of this disease,” she says. Ultimately, Courtney and her family are walking to help find a cure. “The work of the Foundation means there’s a chance my daughter will never have to be on dialysis,” says Courtney. “Maybe she’ll be among the last in her generation given a scary, and often life-threatening, diagnosis of ARPKD. “The Foundation gives me and my family hope.”


Fighting for family. Fighting for the future.

emily-parmelee2

Emily became the Northeast Ohio Volunteer Walk Coordinator after her father’s transplant.

Emily Parmelee and the Northeast Ohio Chapter are united in the fight to end PKD.

Finding a donor
The year leading up to my father’s transplant surgery was challenging. My father went through donor testing with two unbelievably generous family members who in the end where not able to donate. My husband and I were planning our wedding and I feared my father wouldn’t be there to walk me down the aisle. Then, a family friend of my husband’s offered his kidney—he had never met my father! He was 27 years old at the time with a daughter on the way and I will never be able to thank him enough for the gift he gave my family. He was a perfect match and twelve days after our wedding we all went to Chicago where the successful transplant surgery took place.

Finding the PKD Foundation
Prior to my involvement with the PKD Foundation, I had only discussed the disease with my family and a few close friends. It has been an amazing journey to get to know other PKD families and hear about their obstacles and stories of love, generosity and the selfless acts that change our lives forever.

emily-parmelee3

PKD has been in Emily’s family for more than four generations.

Why she walks for PKD
PKD has been in my family for more than four generations on my father’s side. I contacted the Foundation after my father’s transplant surgery in 2011 to see how I could volunteer. I was invited to attend Leadership Training in Kansas City.  That’s where I signed on to be the 2012 Walk Coordinator. I am resuming that role again this year. For all the wonderful, heartwarming stories about donors and successful surgeries, I know there are just as many people who have struggled in the kidney transplant process or passed away from the disease. I don’t want my siblings, cousins and our future children to have to face these life- threatening uncertainties. I walk to raise money for PKD research and find a cure to END PKD.


A cure for Cooper

A Cure for Cooper

Cooper won the “Golden Kidney” for raising the most money of any walker in Iowa last year.

A routine ultrasound 20 weeks into her pregnancy gave Kelly Delveau news no expectant mother wants to hear. Her son would be born with ARPKD. This is why the “Cure for Cooper” team walks for PKD every year in Iowa. “They could see that his kidneys were white and enlarged in utero,” shares Kelly. “They thought he would live to be born, but might not make it much longer after that.” But Cooper defied the odds. Today he’s a rambunctious nine-year-old boy who loves to play hockey. Living with ARPKD is “his normal” according to his mom. Cooper experienced some developmental delays as he was growing up. His sight and speech took longer to mature than other kids. He’s also had some pretty serious dental issues. Kelly says his doctors are unsure if they’re linked to Cooper’s ARPKD. But she’s relieved Cooper’s disease isn’t aggressive at this point and he can enjoy a regular childhood. “He seems to have fewer cysts, but the ones he has are getting bigger,” she explains. “He’s growing and healthy, we are so blessed.” Cooper’s grandmother, Cathy Young, is the captain of the “Cure for Cooper” team and she walks because she wants Cooper to stay healthy. “We knew immediately after he was diagnosed in utero that the quality of Cooper’s future lies in research and the progress that can be made in treating PKD,” she says. “Learning about the PKD Foundation gave us hope, and the Walk for PKD means money for research,” Cathy continues. “Cooper’s future is so linked to medical breakthroughs. I care passionately about doing my part to see that important research gets funded.” “The Cure for Cooper” team reaches out to friends and family through emails and letters to fundraise for their walk. In her letters, Cathy explains the disease and emphasizes that strides in PKD research will vastly improve Cooper’s life and that of everyone affected by PKD. The family also likes the sense of togetherness and camaraderie at the walks. “It’s nice to know you’re not alone,” says Kelly. “Even more than money for research, the walks also help raise awareness of PKD. Before Cooper was diagnosed I’d never even heard of it.” Both Kelly and Cathy are grateful the PKD Foundation is there to help them navigate the challenges of living with ARPKD. “I can’t say it enough — the PKD Foundation gives us hope,” Cathy says. “It keeps us informed and involved and will always be dear to our hearts because of their focus on finding a cure.”


Walking toward a cure

Gary Saks and family

The Saks Family has done the Walk for PKD ever since Adam was diagnosed with PKD.

“As soon as we found out about Adam’s condition we looked into how we could raise funds for a cure,” says Gary Saks. Gary’s son, Adam was diagnosed with PKD at 28 years old. Prior to that, he suffered mysterious health problems that countless doctors couldn’t diagnose. “A couple years prior to his PKD diagnosis, he had mildly high blood pressure at routine check ups,” Gary says. “Diet and exercise weren’t controlling it. “I kept a blood pressure cuff and stethoscope at home so I could monitor it and one day it got so unusually high I had to take him to Urgent Care.” Gary is grateful the doctor requested additional testing that included a kidney ultrasound as there is no history of kidney disease in either side of the family. The tests showed full-blown PKD. That was eight years ago. Gary and his family have been walking toward a cure for PKD ever since. He and his wife gather friends and family for their walk to help make life better for Adam and the thousands of people across the country who have PKD. “We need to create an awareness of a disease that few people have heard of and isn’t funded the way it should be,” he says. “Curing this disease will take a tremendous financial and emotional burden off of families and reduce our country’s health care costs substantially.”


Traci Short and Team Short

Team Short

Team Short was the largest team in the 2012 Walk for PKD.

Traci Short’s Team Short was the largest team in the Walk for PKD in 2012 with nearly 200 walkers. Traci’s husband, Kevin, and 14-year-old daughter Bailey have PKD. “I have two family members with confirmed PKD, and participating in the Walk is my way to make a difference,” Traci said. “My daughter Bailey is only 14. The funds we raise now for research can make a really big difference in her life.” 2013 will be Team Short’s third year participating in the Walk for PKD. The first year, Team Short had 20 participants. The next year, Kevin was in renal failure and she wanted to have big numbers to help him pull through. Bailey is Traci’s middle child, she also has Parker, who is 12, and Sydney, who is 16. “Sydney is in high school and I knew her high school requires a certain amount of community service,” Traci said. “So I set up a booth at the high school community service fair and recruited walkers. This was a huge help to increasing the team from 20 to 195. I still see the bright orange Team Short shirts all over town.” Traci and Team Short’s efforts worked, raising $22,000 for the PKD Foundation through the Walk for PKD. “I didn’t realize what a difference I could actually make as one person,” Traci said. “I thought Team Short was just a drop in the bucket, but we raised nearly $25,000 to help end PKD. You can do it too, just recruit from all areas of your life. You would be surprised how everyone in your life really wants to help and be a part of ending PKD!”


The LeBlanc family and team Molly Mae

Molly Mae

Jill and Andy LeBlanc started team “Molly Mae” for their daughter who
has ARPKD.

Expectant parents Jill and Andy LeBlanc were distressed by the 20-week ultrasound showing a potential problem with their baby’s kidneys. At 28 weeks, the diagnosis was determined likely to be ARPKD. Soon after came bedrest and close prenatal monitoring for 6 weeks until Molly Mae LeBlanc was born on December 12, 2012. Four weeks after her birth, genetic blood testing confirmed the diagnosis of ARPKD. Learning about ARPKD and how to care for Molly has been difficult for the LeBlancs. In Molly’s seven short months of life, she has been hospitalized four times. Her daily care requires multiple medications and home monitoring to treat hypertension caused by ARPKD. Despite the challenges, the LeBlanc family counts their blessings daily in having a happy, growing and beautiful baby girl. The Louisiana-raised couple currently lives in Washington, D.C. with wonderful local support of friends, colleagues and Andy’s amazing Aunt. They both have connections coast-to-coast. Documenting Molly’s journey on social networking and email has enabled them to easily update family and friends and broaden their support network. It also allows them to spread the word about Team Molly Mae and the Walk for PKD. Jill and Andy started Team Molly Mae during Molly’s last hospitalization, and it was a welcome distraction from intensive care. This is Team Molly Mae’s first year in the Walk for PKD, but they have already attracted nearly 30 team members and have raised almost $4,000. “The Walk for PKD is an opportunity for our family to raise awareness and money for research and to support other families going through the same thing,” Jill said. “The idea of being able to do something for Molly and her future means more than I can say. “People are always asking me how they can help, and now when they ask, I tell them about Team Molly Mae and joining us in the Walk for PKD,” Jill said. “We have posted about the walk on Facebook, sent an email campaign and there has been an outpouring of support. Even those we haven’t talked to in years are giving and joining our team. It means so much to have this opportunity for our friends and family to get together and share their love, even if they haven’t met Molly yet. “I don’t feel like I have done a lot of work, but our team has had a lot of success,” Jill said. “Not many people we know have knowledge of ARPKD, but this is a way they can learn and support research of this disease.”


Andrew Doughty and team Hunting For a Cure

Andrew Doughty

Andrew is the team captain for “Team Hunting”.

Andrew Doughty is eight years old and he has ADPKD. He was only two months old when he was diagnosed. When Andrew was one, his mother, Becca Fisher, organized Team Hunting for a Cure for the Boston Walk for PKD. This year will be their seventh Walk, and they were instrumental in bringing the Walk for PKD to Rhode Island where they live. Andrew is the team captain and knows the importance of the Walk for PKD. “You just need to tell people about the Walk so a lot of them will come, and then ask them for money,” Andrew said. “You can save lives by walking and donating money that helps PKD researchers.” For Becca, it gives her a way to channel her time and energy into something positive. “As a mom, it is an opportunity for me to get out in the community and raise awareness and funding towards treatments,” Becca said. “It is important for me to do anything to find treatments and a cure for Andrew and for everyone with PKD.” As for Andrew, it gives him a chance to be a kid. “My favorite part is getting to see my friends and doing the Penny Kids Dash,” he said.