Nicholas Peters medical treatment
Donation protected
Hello family, friends, and those willing to help,
We want to tell you a story of hope and bravery. The day our son Nicholas was born was one of the most joyous and scary days of our lives. After an emergency c-section due to his dropping heartrate, the doctors told us our baby had tracheomalacia (floppy airway), a retracted jaw, and craniosynostosis (premature fusing of one the bones in his skull). Nicky also developed obstructive sleep apnea and was on an apnea monitor for years.
Nicky slowly gained weight, and his jaw and airway improved. When he was 3 months old, he had a long strip of bone removed from his skull to allow his brain to grow properly. To our relief, our sweet- tempered baby healed without complications. He did however, wear a corrective helmet for over a year.
Meanwhile, Nicky was a month old when he began to arch his back, scream in pain, and vomit. Tests showed Nicky had severe GERD (reflux) even on medicine. We reluctantly put our toddler through another surgery to try to relieve his pain and prevent future damage. The fundoplication, or “stomach wrap” greatly decreased, but did not cure his GERD. At the same time, a gastrostomy, or stomach tube was placed to help release air bubbles and was used for supplemental feeding. The gastrostomy tube was supposed to be for a month. It would stay for 10 years! He continued to suffer from frequent stomachaches and could only eat a little at a time.
However, Nicky refused to let his stomach, frequent respiratory infections, or a recently diagnosed Tic Disorder hold him back. He was 10 (and still had his stomach tube) when he started playing Little League baseball. He made friends, grew in confidence (and height!) and opted to try public school for the first time. He volunteered summers at the Christian Academy he attended when he was little.
Fast forward to high school. He was accepted into South Broward High School’s Marine Magnet program and on the JV baseball team. In December of his junior year, Nick began to have dizzy spells and episodes where he would get weak, shaky, nauseous, and his sight would go dark. He was diagnosed with vaso-vagal hypotension and a faulty heart valve. These symptoms began to abate by the summer, only to be replaced by increased stomach pain and distressing symptoms.
In July of 2018, he was diagnosed with a rare condition called Congenital Sucrase Isomaltase Deficiency (CSID) which disrupts the breakdown of sugars and certain starches. At a time when he should be enjoying his last year of high school, playing Varsity baseball, and looking forward to graduation, Nicky is in too much pain to even go to school.
Despite modifying his diet and taking up to six different medicines a day for his stomach, Nick has missed WEEKS of school already and the stress of trying to make up all his work makes him feel worse. He even volunteered to have another surgery, to “hurt really bad for a little while and be done”. Unfortunately, there is no simple surgery this time.
After much research, I learned of a one of a kind Abdominal Pain Program at Mercy Children’s Hospital that brings together a team of specialists to evaluate, diagnose, and treat chronic abdominal pain to help kids reduce their pain and get back to school, chores, even sports. They analyze existing medical records and test results, interview and assess each patient, and put together a unique and comprehensive interdisciplinary treatment program specific to his or her needs. Biofeedback, acupuncture, homeopathic remedies, and cognitive-behavioral therapy are just some of the treatment options offered as well as up to date information from their gastroenterology research program.
Unfortunately, this specialty clinic is in Kansas City, Missouri! There is nothing even remotely similar in Florida, or in neighboring states. As parents, we are used to helping, not asking for help. However, years of medical bills have exhausted our resources.
So, we are asking for help- for your donations and prayers to raise money to get Nicky into this Abdominal Pain Program AS SOON AS POSSIBLE, and pay for medical bills, follow-up flights, clinic visits, lodging, procedures, therapies, and medications.
Nick loves to be outside, running or playing catch. He hopes to pursue a career in criminal justice. He is funny, loving and loyal. In the dugout, “Nicky P”, as he is called, is always one of the first players to cheer on his team, give high fives and encourage others. He is a terrific young man.
Please help us give Nicky hope, help him be healthy and happy in time to enjoy the rest of his senior year. Thank you from the bottom of our hearts, The Peters family
We want to tell you a story of hope and bravery. The day our son Nicholas was born was one of the most joyous and scary days of our lives. After an emergency c-section due to his dropping heartrate, the doctors told us our baby had tracheomalacia (floppy airway), a retracted jaw, and craniosynostosis (premature fusing of one the bones in his skull). Nicky also developed obstructive sleep apnea and was on an apnea monitor for years.
Nicky slowly gained weight, and his jaw and airway improved. When he was 3 months old, he had a long strip of bone removed from his skull to allow his brain to grow properly. To our relief, our sweet- tempered baby healed without complications. He did however, wear a corrective helmet for over a year.
Meanwhile, Nicky was a month old when he began to arch his back, scream in pain, and vomit. Tests showed Nicky had severe GERD (reflux) even on medicine. We reluctantly put our toddler through another surgery to try to relieve his pain and prevent future damage. The fundoplication, or “stomach wrap” greatly decreased, but did not cure his GERD. At the same time, a gastrostomy, or stomach tube was placed to help release air bubbles and was used for supplemental feeding. The gastrostomy tube was supposed to be for a month. It would stay for 10 years! He continued to suffer from frequent stomachaches and could only eat a little at a time.
However, Nicky refused to let his stomach, frequent respiratory infections, or a recently diagnosed Tic Disorder hold him back. He was 10 (and still had his stomach tube) when he started playing Little League baseball. He made friends, grew in confidence (and height!) and opted to try public school for the first time. He volunteered summers at the Christian Academy he attended when he was little.
Fast forward to high school. He was accepted into South Broward High School’s Marine Magnet program and on the JV baseball team. In December of his junior year, Nick began to have dizzy spells and episodes where he would get weak, shaky, nauseous, and his sight would go dark. He was diagnosed with vaso-vagal hypotension and a faulty heart valve. These symptoms began to abate by the summer, only to be replaced by increased stomach pain and distressing symptoms.
In July of 2018, he was diagnosed with a rare condition called Congenital Sucrase Isomaltase Deficiency (CSID) which disrupts the breakdown of sugars and certain starches. At a time when he should be enjoying his last year of high school, playing Varsity baseball, and looking forward to graduation, Nicky is in too much pain to even go to school.
Despite modifying his diet and taking up to six different medicines a day for his stomach, Nick has missed WEEKS of school already and the stress of trying to make up all his work makes him feel worse. He even volunteered to have another surgery, to “hurt really bad for a little while and be done”. Unfortunately, there is no simple surgery this time.
After much research, I learned of a one of a kind Abdominal Pain Program at Mercy Children’s Hospital that brings together a team of specialists to evaluate, diagnose, and treat chronic abdominal pain to help kids reduce their pain and get back to school, chores, even sports. They analyze existing medical records and test results, interview and assess each patient, and put together a unique and comprehensive interdisciplinary treatment program specific to his or her needs. Biofeedback, acupuncture, homeopathic remedies, and cognitive-behavioral therapy are just some of the treatment options offered as well as up to date information from their gastroenterology research program.
Unfortunately, this specialty clinic is in Kansas City, Missouri! There is nothing even remotely similar in Florida, or in neighboring states. As parents, we are used to helping, not asking for help. However, years of medical bills have exhausted our resources.
So, we are asking for help- for your donations and prayers to raise money to get Nicky into this Abdominal Pain Program AS SOON AS POSSIBLE, and pay for medical bills, follow-up flights, clinic visits, lodging, procedures, therapies, and medications.
Nick loves to be outside, running or playing catch. He hopes to pursue a career in criminal justice. He is funny, loving and loyal. In the dugout, “Nicky P”, as he is called, is always one of the first players to cheer on his team, give high fives and encourage others. He is a terrific young man.
Please help us give Nicky hope, help him be healthy and happy in time to enjoy the rest of his senior year. Thank you from the bottom of our hearts, The Peters family
Organizer
Michelle McCarty Peters
Organizer
Hollywood, FL