In memory of Karen Willow Schaub
Donation protected
My name is Jeff and I am Karen's grandfather. This girl was the brightest star I knew on earth. Her life was filled with adversity but she persevered and endured with all the strength of an angel. She had a beautiful smile that she shared with everyone and touched us all with her joy of life. Her family endured through many things that would tear others apart, but this girl had a spirit that inspired. Karen's parents, put all else on hold to care and nurture her and have been emotionally and financially devastated.
KAREN'S STORY:
Karen Willow Schaub (Kare Bear) passed away on Saturday, 9/5/2020, from complications of ARPKD, a debilitating kidney/liver disease that she battled from her first breath to her last. She leaves behind Mom and Dad, Danielle and Jared, an older brother Darrin and a little sister Zofia. Karen also leaves behind a large extended family and many friends. All of us will miss her dearly.
ARPKD is a genetic disorder that causes cysts to grow uncontrollably on organs, primarily kidneys, rendering them useless and affects the liver and other major organs. ARPKD strikes 1 in 20,000 births so it is rare and not well understood, but the awful truth is that this disease does not discriminate. It is an evil, insidious disease that manifests itself in many ways: Underdeveloped lungs, high blood pressure, loss of kidney function, problems with blood flow through the liver, which can lead to serious internal bleeding and constant serious infections including sepsis that can damage multiple organ systems.
Karen was born October 30, 2016 and we were informed by the doctors that she had little chance of survival. The only chance they gave was an emergency transfer to Motts Children’s Hospital at the University of Michigan, and so her first journey started. Karen spent most of her first year of life in a bed in Mott’s Children’s Hospital, hooked up to a half dozen machines, desperately fighting the disease that eventually overpowered her. Karen faced innumerable surgeries and procedures during her battle starting with removal of a kidney when she was only 4 days old and a second surgery to remove her remaining kidney just a week later. When she made it through these major procedures, we knew we had a fighter on our hands. She truly was a miracle baby. One of the most joyous days was the day she was well enough to finally come home from the hospital. Although she had to be hooked up to a dialysis machine 12 hours per day, every day, she kept up a smile and a laugh that we can never forget.
Karen’s life was filled with countless doctors’ appointments and the inevitable hospital stay every few months as she battled constant infections and complications her disease caused her. On 5 separate occasions, the infection turned into sepsis and we were sure we would lose her, but she fought her way back and was eventually able to come home each time. Danielle and Jared were always at her side willing this little girl to go on. They gave up their careers for her and focused on trying to help make her life as good and joyous as they could.
Karen loved books and movies and her favorite subject was princesses. She enjoyed dressing up and learning and singing the songs of the movies she most enjoyed. The Disney movie Moana proved to be her favorite as she watched this constantly and memorized the dialog and songs. Just when you thought she was asleep and paused the movie her eyes would jump open and she would point to the screen and let you know she wasn’t quite ready for it to be over. Karen displayed an indomitable spirit and did not let her illness dull her zest for life even though she was often in pain.
Karen loved the outdoors even though she rarely got to go outside because of her affliction. She was very undersized for her age (another ARPKD penalty), and had trouble with strength in her legs, so she could go out in a stroller once in awhile when the conditions were exactly right. The smile on her face was something to behold when she was outdoors. Our best dreams were seeing Karen running barefoot through the grass under the summer sun. If this only could have been realized on this earth.
Only four months ago things looked so positive for this lovely little girl. She had not been in the hospital for four months (a personal best,) finally qualified for a kidney transplant, signs of infection were nil, she was getting stronger everyday and even got to attend school a bit. All the months and years that the end seemed inevitable were forgotten as all of our hopes soared.
Then the monster raised its ugly head once again three months ago. Karen was hospitalized for an internal infection once again and was never able to leave the hospital. Her last months were spent in a hospital bed as one infection after another attacked her frail little body, weakening her until it was too much for her and the doctors ran out of heroics. Fortunately, her family was able to spend her last hours with her as she passed peacefully into the Lord’s hands.
Mathew 18:3 states, “Truly I say to you, unless you turn and become like children, you will never enter the kingdom of heaven”.
Nothing about her passing is good or right or makes sense. Everyone is probably asking themselves why this had to happen. We do not want Karen’s passing to just be another statistic. We want all of you to be thankful for your child’s messy room, for driving your son to baseball practice for the fourth time this week and for helping your daughter practice her spelling words. These everyday tasks are the stuff of life, and Karen’s family, all of us, would give anything to experience regular life with our lovely Karen once again.
I would like to extend all our families thanks to the doctors and nurses of Motts Children’s Hospital (U of M) and Devos Children’s Hospital (Grand Rapids) that worked tirelessly helping Karen fight this malady. Your efforts played a big part in enhancing Karen’s quality of life through her ordeal.
Thank you for taking care of our little princess!
This GoFundMe is set up to help cover Karen’s funeral expenses and owed medical expenses which are estimated at around $15,000. If you could support, our GoFundMe by making a donation.and then sharing the campaign with your social network it would be truly appreciated. I know that money can be tight, so please know that even $5.00 helps to get closer to our goal. I will be happy to answer any questions. Thank you. Attached are a few videos and pictures to help memorialize Karen in this campaign. Thank you from the bottom of our hearts.
Karen's Facebook Page (right click and open link in new window)
PICTURES:
VIDEOS
Laughing in the rain
KAREN'S STORY:
Karen Willow Schaub (Kare Bear) passed away on Saturday, 9/5/2020, from complications of ARPKD, a debilitating kidney/liver disease that she battled from her first breath to her last. She leaves behind Mom and Dad, Danielle and Jared, an older brother Darrin and a little sister Zofia. Karen also leaves behind a large extended family and many friends. All of us will miss her dearly.
ARPKD is a genetic disorder that causes cysts to grow uncontrollably on organs, primarily kidneys, rendering them useless and affects the liver and other major organs. ARPKD strikes 1 in 20,000 births so it is rare and not well understood, but the awful truth is that this disease does not discriminate. It is an evil, insidious disease that manifests itself in many ways: Underdeveloped lungs, high blood pressure, loss of kidney function, problems with blood flow through the liver, which can lead to serious internal bleeding and constant serious infections including sepsis that can damage multiple organ systems.
Karen was born October 30, 2016 and we were informed by the doctors that she had little chance of survival. The only chance they gave was an emergency transfer to Motts Children’s Hospital at the University of Michigan, and so her first journey started. Karen spent most of her first year of life in a bed in Mott’s Children’s Hospital, hooked up to a half dozen machines, desperately fighting the disease that eventually overpowered her. Karen faced innumerable surgeries and procedures during her battle starting with removal of a kidney when she was only 4 days old and a second surgery to remove her remaining kidney just a week later. When she made it through these major procedures, we knew we had a fighter on our hands. She truly was a miracle baby. One of the most joyous days was the day she was well enough to finally come home from the hospital. Although she had to be hooked up to a dialysis machine 12 hours per day, every day, she kept up a smile and a laugh that we can never forget.
Karen’s life was filled with countless doctors’ appointments and the inevitable hospital stay every few months as she battled constant infections and complications her disease caused her. On 5 separate occasions, the infection turned into sepsis and we were sure we would lose her, but she fought her way back and was eventually able to come home each time. Danielle and Jared were always at her side willing this little girl to go on. They gave up their careers for her and focused on trying to help make her life as good and joyous as they could.
Karen loved books and movies and her favorite subject was princesses. She enjoyed dressing up and learning and singing the songs of the movies she most enjoyed. The Disney movie Moana proved to be her favorite as she watched this constantly and memorized the dialog and songs. Just when you thought she was asleep and paused the movie her eyes would jump open and she would point to the screen and let you know she wasn’t quite ready for it to be over. Karen displayed an indomitable spirit and did not let her illness dull her zest for life even though she was often in pain.
Karen loved the outdoors even though she rarely got to go outside because of her affliction. She was very undersized for her age (another ARPKD penalty), and had trouble with strength in her legs, so she could go out in a stroller once in awhile when the conditions were exactly right. The smile on her face was something to behold when she was outdoors. Our best dreams were seeing Karen running barefoot through the grass under the summer sun. If this only could have been realized on this earth.
Only four months ago things looked so positive for this lovely little girl. She had not been in the hospital for four months (a personal best,) finally qualified for a kidney transplant, signs of infection were nil, she was getting stronger everyday and even got to attend school a bit. All the months and years that the end seemed inevitable were forgotten as all of our hopes soared.
Then the monster raised its ugly head once again three months ago. Karen was hospitalized for an internal infection once again and was never able to leave the hospital. Her last months were spent in a hospital bed as one infection after another attacked her frail little body, weakening her until it was too much for her and the doctors ran out of heroics. Fortunately, her family was able to spend her last hours with her as she passed peacefully into the Lord’s hands.
Mathew 18:3 states, “Truly I say to you, unless you turn and become like children, you will never enter the kingdom of heaven”.
Nothing about her passing is good or right or makes sense. Everyone is probably asking themselves why this had to happen. We do not want Karen’s passing to just be another statistic. We want all of you to be thankful for your child’s messy room, for driving your son to baseball practice for the fourth time this week and for helping your daughter practice her spelling words. These everyday tasks are the stuff of life, and Karen’s family, all of us, would give anything to experience regular life with our lovely Karen once again.
I would like to extend all our families thanks to the doctors and nurses of Motts Children’s Hospital (U of M) and Devos Children’s Hospital (Grand Rapids) that worked tirelessly helping Karen fight this malady. Your efforts played a big part in enhancing Karen’s quality of life through her ordeal.
Thank you for taking care of our little princess!
This GoFundMe is set up to help cover Karen’s funeral expenses and owed medical expenses which are estimated at around $15,000. If you could support, our GoFundMe by making a donation.and then sharing the campaign with your social network it would be truly appreciated. I know that money can be tight, so please know that even $5.00 helps to get closer to our goal. I will be happy to answer any questions. Thank you. Attached are a few videos and pictures to help memorialize Karen in this campaign. Thank you from the bottom of our hearts.
Karen's Facebook Page (right click and open link in new window)
PICTURES:
VIDEOS
Laughing in the rain
Organizer
Jeffrey Schaub
Organizer
Grand Rapids, MI