Team Bentley
Donation protected
On June 14, 2011, our little warrior, Bentley, was born 9 weeks prematurely weighing in at 2 pounds, 10 ounces. After he was born, we learned that Bentley had numerous birth defects that would require countless operations to treat throughout his lifetime. At 9 days old, the first surgery was to give him a feeding tube because he was born with esophageal atresia and a tracheoesophageal fistula (esophagus ended at the back of his throat and the bottom end was connected to his windpipe). This surgery was to correct the TE fistula and clip his esophagus to his spine so it would stretch while he grew.
At 3 ½ months old, Bentley had his second surgery to connect his esophagus. Bentley’s surgeon, Dr. Pitcher, happened to be one of three people in the entire world to know how to fix the severe esophageal atresia that Bentley was born with. Bentley spent four consecutive months at the University of Iowa Children's Hospital in the neonatal intensive care unit (NICU) and gained a long list of diagnoses since birth to now. Including Dr. Pitcher, Bentley gained a large team of miracle making health care providers and specialists to care for him as well as became the inaugural members in Bentley’s fan club.
Bentley has Goldenhar Syndrome, VACTERL syndrome, left sided microtia (no left ear), facial palsy, chronic lung disease from both prematurity and a congenital condition, no left kidney but 2 right kidneys, spinal deformity, fused ribs, hydrocephalus, oral aversion, cardiac anomalies, hypotonia, tracheomalacia, chiari malformation, questionable seizures, and developmental delays. Bentley’s condition is quite fragile and because he is so susceptible to illness, we self-isolate to try to prevent as much illness as possible. Bentley requires in home nursing care while we work. All of his nutrition is through a feeding tube. In addition to his home care nurses, he has a huge team of experts that travel to our home to provide Bentley’s therapy and learning needs until he is strong and well enough to go to preschool accompanied by his nurse.
Once we took Bentley home from the NICU, it took only one helicopter trip to Iowa City for us to realize we needed to move from our small town in Northern Iowa closer to a large hospital. In 2012, we moved our family to Ankeny, Iowa to be close to Blank Hospital. Unfortunately, Blank Children’s Hospital is not equipped to care for Bentley’s medical complexity requiring us to continue to spend an enormous amount of time two hours away in Iowa City for routine appointments, testing, emergency visits, hospitalizations, and surgeries.
As Bentley ages, he has faced new medical challenges requiring more expertise than some of the specialties at University of Iowa Children’s Hospital can provide. We now are transitioning most of Bentley’s care from Iowa City to Gillette Children’s Hospital in St. Paul, Minnesota.
As of today, Bentley has required 11 surgeries and so many hospitalizations that we quit counting. Over the last four years, we have spent months, weeks, most holidays and special events in a hospital and away from our older children, Clint and Kennedy. Spending all of the time in the hospital with Bentley, traveling to appointments that are sometimes four hours away from our home has caused a huge financial impact to our family.
We are raising money to help cover the expenses that Bentley’s insurance plans do not cover. Over the last four years there have been many people from our family, friends, coworkers, neighbors, church members, and perfect strangers that have heard Bentley’s story or watched our family struggle and stepped in to help during many times of need. We are forever grateful for the blessings and gifts our family has received. There are many times that the assistance of these angels meant the difference between survival and homelessness, choosing between eating and utilities, and most of all, caring for our other children especially during the holidays.
We have not created a Go Fund Me page in the past because we feel horrible asking for help. We have no idea how to put a number on this request. We chose $2011 because that would help relieve some of the expenses we have faced this month.
Raising a child with special needs, disabilities, and developmental delays requiring a life time of specialized care means that this journey is a long and winding road. This never ends. The struggle is each and every day. What Bentley endures is a far bigger challenge. He is our warrior and God has saved his life many, many times. We have witnessed miracle after miracle. Bentley has taught us more in four short years about life than we have learned in our lifetimes combined. We do know that the power of prayer from near and far is what we rely on when we are sitting at Bentley’s bedside through each hospitalization and illness. We will do anything and everything to move heaven and earth to get Bentley the absolute best care that he needs and deserves. We recently went before the Iowa Legislators to fight for Bentley’s care and the care of other Iowan’s with disabilities as the State is changing the health care benefits to Iowans with Medicaid.
From the bottom of our hearts, thank you for your thoughts, prayers, time, consideration, donations, and all good juju. We are forever grateful. #TeamBentley
Love,
Nathan and Kris Erickson
Bentley, Kennedy, & Clint
At 3 ½ months old, Bentley had his second surgery to connect his esophagus. Bentley’s surgeon, Dr. Pitcher, happened to be one of three people in the entire world to know how to fix the severe esophageal atresia that Bentley was born with. Bentley spent four consecutive months at the University of Iowa Children's Hospital in the neonatal intensive care unit (NICU) and gained a long list of diagnoses since birth to now. Including Dr. Pitcher, Bentley gained a large team of miracle making health care providers and specialists to care for him as well as became the inaugural members in Bentley’s fan club.
Bentley has Goldenhar Syndrome, VACTERL syndrome, left sided microtia (no left ear), facial palsy, chronic lung disease from both prematurity and a congenital condition, no left kidney but 2 right kidneys, spinal deformity, fused ribs, hydrocephalus, oral aversion, cardiac anomalies, hypotonia, tracheomalacia, chiari malformation, questionable seizures, and developmental delays. Bentley’s condition is quite fragile and because he is so susceptible to illness, we self-isolate to try to prevent as much illness as possible. Bentley requires in home nursing care while we work. All of his nutrition is through a feeding tube. In addition to his home care nurses, he has a huge team of experts that travel to our home to provide Bentley’s therapy and learning needs until he is strong and well enough to go to preschool accompanied by his nurse.
Once we took Bentley home from the NICU, it took only one helicopter trip to Iowa City for us to realize we needed to move from our small town in Northern Iowa closer to a large hospital. In 2012, we moved our family to Ankeny, Iowa to be close to Blank Hospital. Unfortunately, Blank Children’s Hospital is not equipped to care for Bentley’s medical complexity requiring us to continue to spend an enormous amount of time two hours away in Iowa City for routine appointments, testing, emergency visits, hospitalizations, and surgeries.
As Bentley ages, he has faced new medical challenges requiring more expertise than some of the specialties at University of Iowa Children’s Hospital can provide. We now are transitioning most of Bentley’s care from Iowa City to Gillette Children’s Hospital in St. Paul, Minnesota.
As of today, Bentley has required 11 surgeries and so many hospitalizations that we quit counting. Over the last four years, we have spent months, weeks, most holidays and special events in a hospital and away from our older children, Clint and Kennedy. Spending all of the time in the hospital with Bentley, traveling to appointments that are sometimes four hours away from our home has caused a huge financial impact to our family.
We are raising money to help cover the expenses that Bentley’s insurance plans do not cover. Over the last four years there have been many people from our family, friends, coworkers, neighbors, church members, and perfect strangers that have heard Bentley’s story or watched our family struggle and stepped in to help during many times of need. We are forever grateful for the blessings and gifts our family has received. There are many times that the assistance of these angels meant the difference between survival and homelessness, choosing between eating and utilities, and most of all, caring for our other children especially during the holidays.
We have not created a Go Fund Me page in the past because we feel horrible asking for help. We have no idea how to put a number on this request. We chose $2011 because that would help relieve some of the expenses we have faced this month.
Raising a child with special needs, disabilities, and developmental delays requiring a life time of specialized care means that this journey is a long and winding road. This never ends. The struggle is each and every day. What Bentley endures is a far bigger challenge. He is our warrior and God has saved his life many, many times. We have witnessed miracle after miracle. Bentley has taught us more in four short years about life than we have learned in our lifetimes combined. We do know that the power of prayer from near and far is what we rely on when we are sitting at Bentley’s bedside through each hospitalization and illness. We will do anything and everything to move heaven and earth to get Bentley the absolute best care that he needs and deserves. We recently went before the Iowa Legislators to fight for Bentley’s care and the care of other Iowan’s with disabilities as the State is changing the health care benefits to Iowans with Medicaid.
From the bottom of our hearts, thank you for your thoughts, prayers, time, consideration, donations, and all good juju. We are forever grateful. #TeamBentley
Love,
Nathan and Kris Erickson
Bentley, Kennedy, & Clint
Organizer
Kris Stein Erickson
Organizer
Ankeny, IA