I am thankful

Individuals share stories of struggle and gratitude

Written by Sara Garrison

Julianna’s story

In July 2015, 9-year-old, Julianna Cundiff called her mother at work complaining of being extremely tired. A few days later, Julianna’s heart was beating rapidly. Her mother, Sarah Kriwiel then took her to the emergency room where after a few days in the hospital, Julianna was diagnosed with aplastic anemia, a rare blood disease where her body quit producing blood cells.

Julianna was prescribed cyclosporine to treat the disease, and after almost a year she achieved remission. Then in Christmas 2017 Sarah’s oldest daughters, Caroline and Mary Kate, returned home from college. The girls mentioned that Julianna looked tired and recalled how she looked when she was first diagnosed.

“Because I am with her every day, I didn’t notice that Julianna looked any different. We took her in to get a blood test the next day and a few days later, doctors revealed that Julianna had relapsed,” says Sarah. “Julianna needed a bone marrow transplant. Unfortunately no members of our family were a match, but a donor was found through the National Bone Marrow Registry. This anonymous donor saved my daughter’s life. We look forward to meeting this person later this year and expressing our deepest, heartfelt gratitude for their selfless gift.”

On April 17, 2018, Julianna received a bone marrow transplant at Children's Mercy Hospital in Kansas City, However, five months later she developed graft versus host disease, and the donor white cells were attacking her body. She was treated with steroids and multiple medications. In April 2019 she developed a 103-degree fever for 10 straight days and was admitted to Children’s Mercy.

“We were so scared. We almost lost her on May 8. She was unresponsive with swelling on the brain and she went into a coma,” says Sarah. “Doctors told me, due to the swelling on the brain, she may never walk or talk again. We believe it was the power of prayer that helped her pull through. She woke up after three days in the coma and started talking to me. It was a moment I will never forget.”

In September 2019 doctors told Julianna, now 13, that she is officially in remission, making this Thanksgiving extra special.

“We truly have so much to celebrate,” says Sarah. “The holidays are a magical time in our family. Throughout this journey we have had so many moments of joy, a lot of tears and many life lessons we have learned. We have tried to live every minute with love, grace and gratitude.”

“Gratitude is so important in our lives, beginning in our hearts and showing through our actions. My heart can’t hold any more gratitude for my kids and our family,” says Sarah. “Having gratitude at this deep level has given me such profound inner peace. Throughout this journey I have chosen to wake up with a grateful heart every day and acknowledge all the goodness in life. When you are grateful it reduces the fear and it heals. We are so thankful that God gave us the strength and courage throughout this journey in our lives.”

Rob Egan

Rob Egan was born with a mild form of cerebral palsy making it hard for him to participate in athletics like his four younger brothers. Throughout his growing-up years, Rob struggled with jealousy and anger. But, he turned his frustration into a positive when he founded American Collegiate Society for Adapted Athletics (ACSAA) in 2009 at just 14 years old.

“When I was 14, I participated in a national essay competition through my school, Wichita Collegiate. This essay talked about the need for collegiate-sponsored wheelchair sports, so it was then that I decided to start a nonprofit organization,” explains Rob Egan, president, ACSAA.

ACSAA strives to further competitive athletic opportunities for disabled students at the college level through tournament-style competitions. The students that participate in ACSAA-sponsored adapted athletic activities include college students as well as non-traditional students and disabled veterans.

“Our goal is to enrich the lives of those with disabilities by providing them with opportunities to participate in adaptive athletics at the collegiate level,” says Egan. “Studies show that the employment rate for people with disabilities doubles when they are able to participate in an adaptive support. Achieving an education is an individual with disabilities’ portal to independence and self sustainability, making a college education incredibly important.”

Today, Egan is 24 years old. In addition to his role as president of ACSAA, he is currently studying to get his degree in public policy from Arizona State University.

The ACSAA is growing as an organization as well. On March 18–21, 2020, ACSAA will host their National Basketball Championship at Wichita State University with about 16 men’s and women’s teams competing for the national title.

This Thanksgiving, Egan says he has a lot to be thankful for. “First of all, I have the greatest friends anyone could ask for. My friends and my wonderful family have lifted me up and helped me through the tough times in my life. I would like to express my general thankfulness for cerebral palsy,” says Egan. “I am also grateful for the people we serve at ACSAA and our donors. This work is one of the greatest joys of my life.”

This holiday season, Egan encourages individuals to give back and help others in need.

“People are generous around the holidays,” says Egan. “During the holiday season, it is important to think about helping those in our community who need our help. There are a lot of great causes that need help. Wichita is such a generous community. It is that generosity that makes Wichita such a magical place.”

For more information about ACSAA, email robegan3@gmail.com.

 
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