Tag Archives: campaign

My Life As A Father And Grandfather Who Needs A Transplant

Kappy Pease is a father and grandfather living with a severe lung disease. He is on the waiting list for a lifesaving double lung transplant. We asked Kappy about his perspective on balancing fatherhood and the challenges of life on the transplant waiting list.

Why Fundraising Works For Us

Since my first visit to the hospital where a social worker suggested we begin a fundraiser to help us with the costs of transplantation, my family has come together and has been very helpful in their efforts to work with HelpHOPELive. So far, because of their dedication, we have been very successful.

Each of my kids has taken time out of their busy life to take some of the burden off of my wife, Theresa, and I, both physically and emotionally. They have each stepped up in their own way and have been very supportive. I know I could not do this without all of them.

Kappy Pease HelpHOPELive

“I could not do this without all of them.”

Although my insurance will cover most of the transplant procedure, there are many hidden and unexpected costs not covered. The expenses begin long before the procedure takes place and they last a lifetime, including travel, lodging, parking and food during countless hospital visits and the unpaid time off that my wife will take in order to care for me after the procedure. Most of all, fundraising will help contribute to the cost of the (antirejection) medications I will need to take for the rest of my life after the transplant.

I have found that much of the support I receive comes from old friends who have learned about my time of need through social media and our HelpHOPELive campaign. Working with HelpHOPELive has been a very positive experience. Their knowledge and support has been very helpful to someone who had no prior experience with fundraising.

Kappy Pease HelpHOPELive

HelpHOPELive provided custom fundraising materials and more.

How My Family Supports Me

It has been very rewarding to watch my kids grow and begin to start their own families. I am very proud to say that they have each become very successful in their own way. I’m humbled by the compliments I have received about my kids. The way they have stepped up for me during this time makes me feel like my wife and I raised an amazing family.

Kappy Pease HelpHOPELive

Family members “have stepped up for me during this time.”

At this point in my life, I feel closer to my kids than ever before. Before my diagnosis, I worked very long hours that caused me to miss out on a lot of my five kids’ daily lives and activities. I especially missed getting to watch their sports games, because sports are something that are very special to both me and my kids.

I feel that the physical limitations of my disease have been more challenging as a grandfather than as a father. My kids are adults now, and they need me more as an advisor and a part of their emotional support system.

Kappy Pease HelpHOPELive

A transplant will help Kappy spend more quality time with his grandkids.

Since my diagnosis, I have been given the chance to spend more time with all of them and grow closer to them; however, because of my disease, there are also many things we still cannot do together. The hardest part is my limited ability to play with my very young grandchildren. Once I get the transplant, I will hopefully be able to do many things that I have missed doing for the last 10 years. That includes golfing, hunting, fishing, playing with my grandkids and taking long walks with my wife.

My advice for a new father is, enjoy every moment because they grow up way too fast.

Kappy Pease HelpHOPELive

“Enjoy every moment” Kappy advises new fathers.

Learn more about Kappy or donate in his honor at helphopelive.org. If you know a father who needs help fundraising for a transplant, reach out to us today to learn how you can help.

It’s International Rare Disease Day

Today is the eighth annual International Rare Disease Day. According to RareDiseaseDay.org, the goal of Rare Disease Day is to raise awareness regarding rare diseases, rare disease research, and the circumstances that rare disease patients face on a daily basis.

In order to show you exactly how rare diseases can impact patients and their families, we’d like to share the story of one special little girl: Alma Claussen.

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Alma Kaleolani Claussen was born with biliary atresia.

Alma Kaleolani Claussen is the daughter of Amy and Jereme Claussen. Alma was born on Tuesday, June 10 with biliary atresia, a life-threatening rare disease.

Biliary atresia impairs a patient’s bile ducts so that bile remains trapped in circulation, slowly poisoning the liver until the organ fails entirely. According to the U.S. Department of Health and Human Services, biliary atresia only affects one out of every 18,000 infants.

Alma, Alma Claussen, Alma Kaleolani Claussen, HelpHOPELive, HelpHOPELive fund, rare disease, rare diseases, Rare Disease Day, Rare Disease Day 2015, biliary atresia

Biliary atresia damages the bile ducts.

Alma experienced her first major surgery for bile duct repair at just two months old. The surgery was insufficient, and doctors informed Amy and Jereme that their infant daughter would need a liver transplant to save her life. Alma was multi-listed to increase her changes of receiving a liver transplant quickly enough to stabilize her system.

Amy and Jereme felt that the walls were crumbling around them. They did the best they could to make day-to-day life feel ordinary to Alma’s three-year-old big brother, Arthur, but Alma’s deteriorating health took a toll on their family. Amy and Jereme fought to find hope in the face of immense fear and uncertainty.

Alma, Alma Claussen, Alma Kaleolani Claussen, HelpHOPELive, HelpHOPELive fund, rare disease, rare diseases, Rare Disease Day, Rare Disease Day 2015, biliary atresia

Alma’s disease deeply affected her family.

On February 23, Alma’s parents reported that their young daughter had secured and received a lifesaving liver transplant. As her color slowly began to fade from jaundiced yellow to rosy pink, Amy was finally able to hold her recovering daughter in her arms.

Alma’s journey highlights some of the most life-altering aspects of a rare disease diagnosis, including the need for urgent treatment and the emotional turmoil that families and friends face as they grapple with a disease that they (and even their medical providers) may not fully understand.

As RareDiseaseDay.org notes, there are over 6,000 identified rare diseases that disrupt the lives of hundreds of millions of sufferers across the globe.Most of these illnesses are difficult or impossible to cure. This Rare Disease Day, we celebrate the resolve displayed by families who are coping with a rare disease diagnosis and are facing the challenge “day-by-day, hand-in-hand.”

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Walk hand-in-hand with rare disease patients and their families.

Medical costs add another layer of difficulty to the lives of rare disease patients and their caretakers. The expenses associated with a liver transplant alone can top $577,000, including pre-transplant care, post-transplant hospital stays, and a lifelong course of immunosuppressants.

You can walk hand-in-hand with these families by learning more about rare diseases and sharing your support on social media. We can work together to show these patients and their families that they are not facing their diagnoses alone.

Show your support now on Facebook or on Twitter. Tag your posts #RareDiseaseDay2015.

HelpHOPELive is supporting Alma and her family as they fundraise for uninsured medical expenses, including recovery care, travel, food, and relocation costs. You can follow Alma’s recovery on her HelpHOPELive campaign page.