Healing for Harmony & Caleb
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My husband and I have been married for almost 14 years. My husband served in the US Navy for the first 10 years of our marriage. During that time we welcomed 2 beautiful kids. Harmony and Caleb have been best friends since Caleb joined the family in March of 2010. While they were born just over 2 years apart their medical journey has made them more like twins in the most unfortunate ways. On Tuesday April 2nd 2019 both Caleb and Harmony were hospitalized. The muscles in Caleb's esophagus stopped working effectively. He could no longer keep any food down. Harmony was throwing up intestinal fluids every hour on the hour. Shortly after admission she developed hypertension as high as 140/109. The medical team at the hospital was challenged to find solutions for our children.
Harmony remains hospitalized. She is currently on sedatives and blood pressure medicine. Since the day the kids were admitted their specialists have encouraged us to find doctors who may have dealt with such complicated cases. Boston Children's Hospital is on top of the list. Since we are no longer a military family our out of pocket minimum for any and all medical care is over $17,000. My husband is a student and I am physical therapist currently carrying insurance for both kids. My premium is over $600 each month and we are still paying medical bills from their procedures from the previous year.
While we do not have the resources, we are determined to find answers for both our children. If you would be willing to assist we would be eternally grateful. God Bless you!
Tory and Angela Taylor
How this journey started....
By 5 months old Harmony began having difficulty keeping any breastmilk down. Her pediatrician misdiagnosed her with severe congestion along with failure to thrive. At 8 months old she was referred to a specialist who determined she had severe reflux. Further testing revealed Harmony had a rare condition called achalasia, a rare disorder of the esophagus making swallowing difficulty and at times impossible. She would constantly bring up anything she tried to eat or drink. At 9 months old Harmony underwent several hours of surgery to repair her esophagus and g-tube insertion. She required g-tube feeds for the next 2 years to ensure she received adequate nutrition and reach her milestones.
Once we found out we were pregnant with Caleb it was a welcome surprise. Fearing he could have medical issues like his sister, my husband and I sought advice of Harmony’s specialists. They seemed confident that the chances of two African-American siblings born with the same disorder would be highly unlikely. At 5 months, Caleb was diagnosed with achalasia and had to undergo the same esophageal repair. While he didn’t require a feeding tube he developed severe lower intestinal dysfunction and would require several hospitalizations to regulate his system.
By 4 years old Harmony’s ability to handle solid foods became almost impossible. She developed lung disease from the severe reflux. Small food particles were making their way into her lungs. She required 67 days of inpatient hospitalization that year. During that time she began vomiting intestinal fluids for close to a week and required a tube extending from her nose to her intestines to temporarily nourish her. She eventually was strong enough to undergo an 8 hour repair of her first esophageal surgery along with placement of a feeding tube. She slowly began was to resume eating solid foods and returned to pre-school. By 6 years old her feeding tube was removed and her lung disease had resolved.
At 4 ½ years of age Caleb had just started pre-school and was learning to play t-ball. He began to have difficulty keeping his food down again. He developed walking pneumonia and lung disease. He experienced unexplained weight loss and doctors feared his initial surgery may have failed. They decided on a revision of his esophageal surgery and he underwent a six-hour procedure. A feeding tube was placed and for the next 2 years he was weaned from the tube and his symptoms resolved.
After a quiet medical year for both kids their health began to decline again. Caleb had difficulty swallowing. He required 4 procedures over 2 years to stretch his tightened esophagus. Harmony was hospitalized twice when she began vomiting intestinal fluid for days. She even developed high blood pressure. She was unable to eat or drink. The doctors were so concerned that after one of her discharges she was sent home with a tube extending from her nose to her intestines. For months she has to be fed from this tube. Even though it was removed after a couple of months the condition returned again 2 more times.
Harmony remains hospitalized. She is currently on sedatives and blood pressure medicine. Since the day the kids were admitted their specialists have encouraged us to find doctors who may have dealt with such complicated cases. Boston Children's Hospital is on top of the list. Since we are no longer a military family our out of pocket minimum for any and all medical care is over $17,000. My husband is a student and I am physical therapist currently carrying insurance for both kids. My premium is over $600 each month and we are still paying medical bills from their procedures from the previous year.
While we do not have the resources, we are determined to find answers for both our children. If you would be willing to assist we would be eternally grateful. God Bless you!
Tory and Angela Taylor
How this journey started....
By 5 months old Harmony began having difficulty keeping any breastmilk down. Her pediatrician misdiagnosed her with severe congestion along with failure to thrive. At 8 months old she was referred to a specialist who determined she had severe reflux. Further testing revealed Harmony had a rare condition called achalasia, a rare disorder of the esophagus making swallowing difficulty and at times impossible. She would constantly bring up anything she tried to eat or drink. At 9 months old Harmony underwent several hours of surgery to repair her esophagus and g-tube insertion. She required g-tube feeds for the next 2 years to ensure she received adequate nutrition and reach her milestones.
Once we found out we were pregnant with Caleb it was a welcome surprise. Fearing he could have medical issues like his sister, my husband and I sought advice of Harmony’s specialists. They seemed confident that the chances of two African-American siblings born with the same disorder would be highly unlikely. At 5 months, Caleb was diagnosed with achalasia and had to undergo the same esophageal repair. While he didn’t require a feeding tube he developed severe lower intestinal dysfunction and would require several hospitalizations to regulate his system.
By 4 years old Harmony’s ability to handle solid foods became almost impossible. She developed lung disease from the severe reflux. Small food particles were making their way into her lungs. She required 67 days of inpatient hospitalization that year. During that time she began vomiting intestinal fluids for close to a week and required a tube extending from her nose to her intestines to temporarily nourish her. She eventually was strong enough to undergo an 8 hour repair of her first esophageal surgery along with placement of a feeding tube. She slowly began was to resume eating solid foods and returned to pre-school. By 6 years old her feeding tube was removed and her lung disease had resolved.
At 4 ½ years of age Caleb had just started pre-school and was learning to play t-ball. He began to have difficulty keeping his food down again. He developed walking pneumonia and lung disease. He experienced unexplained weight loss and doctors feared his initial surgery may have failed. They decided on a revision of his esophageal surgery and he underwent a six-hour procedure. A feeding tube was placed and for the next 2 years he was weaned from the tube and his symptoms resolved.
After a quiet medical year for both kids their health began to decline again. Caleb had difficulty swallowing. He required 4 procedures over 2 years to stretch his tightened esophagus. Harmony was hospitalized twice when she began vomiting intestinal fluid for days. She even developed high blood pressure. She was unable to eat or drink. The doctors were so concerned that after one of her discharges she was sent home with a tube extending from her nose to her intestines. For months she has to be fed from this tube. Even though it was removed after a couple of months the condition returned again 2 more times.
Organizer and beneficiary
Latricia Roundtree
Organizer
Ocoee, FL
Angela Taylor
Beneficiary