A Hoosier family’s struggle will help save the lives of others. Bryce Clausen was a one-year-old who was diagnosed with Krabbe, a rare genetic disease, and recently passed away. His difficult journey and shortened life highlight the need to screen newborns for the disease.
There is no cure for Krabbe, but those diagnosed and treated early have better chances of living longer, healthier lives. Once symptoms appear, it is too late for treatment. Bryce was not screened at birth, and his diagnosis came only after symptoms appeared.
In addition to Krabbe, the new law I supported also adds Pompe disease and Hurler syndrome to Indiana’s newborn screening panel. This was the first bill signed into law by Gov. Eric Holcomb this session.
Our hearts ache for Bryce and his family who bravely shared their story to help save others. The Clausen’s are true heroes who turned their struggle into meaningful change.
In addition to pushing for this legislation, the Clausen’s are raising money to sponsor a theme room in Bryce’s name at the Peyton Manning Children’s Hospital. To learn more about Bryce’s battle and support their efforts, click here.
Written by Joel Clausen, Bryce’s father
Bryce Harlan Clausen was born January 25, 2018 at 10:02am at 37 weeks. Bryce was born via C-section due to a few complications with mom and baby. After birth, Bryce spent 15 days in the NICU while dealing with some lung and feeding issues. 15 of the longest days of his parents life, but 15 days that showed what an absolute warrior Bryce was. So many folks, family/friends/others, reached out to help support the family while Bryce was confined to the NICU. So many people reached out that wanted to help in any way they could which led Bryce’s parents to start a GoFundMe page with the sole purpose of giving back to every single doctor or nurse that had helped care for Bryce while in the hospital. Thousands of dollars raised later and on advise from a nurse family friend, who told the family that nurse break room luxuries are paid for by the nurses themselves, the Clausen’s bought a brand new fridge and microwave for the NICU break room. They also made individual care packages for more than 50 nurses and doctors. Finally, with the remaining funds, a book cart was purchased for the NICU floor, complete with a premie book written by a family friend that has Bryce’s name on the inside of each of the books. Bryce’s legacy was started, seemingly at birth.
For the first few months of Bryce’s life, he was just like any other baby. He was laughing and playing and was as happy as any baby could be. Things started to change with Bryce at about 5 months of life. He became very upset for hours and hours a day. He stopped rolling over and smiling all together. His body became stiff, often times he was so stiff his parents couldn’t even remove his onesies. He refused to take a bottle. He was losing weight. Numerous trips to his pediatrician to try different things to help him all led to nothing more than more questions than answers. Bryce underwent an MRI and on November 1, 2018, Bryce was diagnosed with Krabbe disease. Krabbe disease is a neurological disease that attacks the myelin, the protective covering around the nerve cells. It is an extremely rare disease. There is no cure and unfortunately it is terminal. 60% of babies make it to one year of life, 16% make it to their 2nd birthday. He will most likely go blind and deaf. He has already started to lose his vision. He will never smile again. He will never crawl or walk or talk.
At this point, his parents are trying to make Bryce as comfortable as possible. They are choosing to make his life as great as possible for however long Bryce has. Part of their quality of life is sharing experiences with Bryce. The Clausen’s refuse to call this a “Bucket List”, instead call it a “Greatest Hits List”, in a nod to experiences his parents and family think a boy should experience. Things like, his first NFL game, playing in the snow, finger painting, a road trip, and most importantly…..making a difference in others lives. In January 2019, Bryce was admitted to Peyton Manning Children Hospital for bacterical pneumonia. He and his father, Joel, stayed in room 4003. While there, Joel noticed that the room was bare and no decorations on the walls. Joel inquired as to why the room was blank and was told that the room was not sponsored. Many of the other rooms have fun themes like a superhero room (Bryce had previsouly stayed in that room), a car room, numerous Colt themed rooms, etc. Joel couldn’t let that thought go, that children admitted to the hospital, sick or hurt, going through some of the worst parts of their young lives and having to be in a boring room wouldn’t make them feel any better. Something had to be done. Here is Bryce’s chance to leave his legacy. Here is Bryces chance to make a difference in someone elses life. Here is Bryces chance to cross off another item on his “Greatest Hits List”.
As much as the Clausen’s would love to do this all by themselves, the $50,000 room sponsor fee is just not in their budget. While they focus on keeping Bryce comfortable and keep him on a busy schedule of medicine and doctor appointments (including trips to Krabbe specialists in Pittsburgh) they can’t stop thinking about helping others. They know what these families are going through that are staying in these rooms. They know the simple joy that a fun themed room can do for a child. In a complex world, it sometimes is the simple things. In a life that is being cut short by a terrible, nasty, rare disease….. leaving a legacy that can live on long after Bryce is the greatest hit on the “Greatest Hits List”