Nathan\'s Medical Expenses
Donation protected
We are raising money for Nathan to take a once in a lifetime trip to Baltimore to be evaluated by the nation\'s leading doctors in the field of neurology/pediatric feeding disorders this July.
Nathan is our one year old little boy. We knew something was different about Nathan since before he was born. He was small for gestational age in utero, had echogenic bowel, and was born with a single transverse palmar crease on his left hand. He was always in pain, could never be comforted, and refused to eat. When he did eat, he would choke. After several inpatient stays, testing, doctors appointments, surgeries and procedures, Nathan has been diagnosed with a laundry list of gastrointestinal issues and a neurological conditions. The bigger problem? His specialists in Boston are stumped. They can\'t link all of his issues together to come up with a cohesive diagnosis, and Nathan isn\'t responding to treatment. Some of Nathan\'s issues include: severe GERD, gastroparesis, hypersensitive gag reflex, sensory processing disorder, failure to thrive, oral aversion and total food refusal (meaning he will not eat anything by mouth), and anemia/vitamin/nutrient deficiencies. Due to this, he also never slept more than 30 minutes at any given time, even overnight, and would scream and/or cry for an average of 15 hours per day for more than 10 months. His lack of proper sleep and nutrition has affected his motor skill development, physical growth, and social skill development as well. The combination of all of these problems suggests that there is a larger diagnosis his physicians are missing, as it would be EXTREMELY rare for a \"typical\" child to exhibit all of these symptoms at the same time.
To give you a sense about just how rare we are talking, here are the numbers his physicians are giving us:
Prenatally:
*Small for gestational age - 9-10% of fetuses
*Echogenic bowel - Less than 0.2% of fetuses
Birth:
*Single transverse palmar crease (left hand) - out of 100 people with this condition, only 1.3 of them are genetically typical
*Severe feeding issues/Severe GERD requiring a feeding tube- less than 1% of typical babies
*Sensory processing disorder-between 3% and 15% of typical children will have some form, but rates are much, much higher for other groups of children
It\'s pretty clear that something is off, we just don\'t know what. We don\'t know what it would mean for Nathan and his future if he were diagnosed with another condition that ties all these problems together. But we certainly need to find out, and taking him to Baltimore is the next step we need to take.
As a result of his refusal to eat, Nathan has been fed by alternative methods/feeding him very, very small amounts every 15 minutes 24 hours per day since his birth. By the time he reached 9 months old, he was so underweight, not growing, and malnourished that he spent 10 days admitted at Massachusetts General Hospital for failure to thrive, and needed a surgically placed G tube in his stomach shortly after. That was his fourth hospital admission since birth for feeding difficulties/failure to thrive and/or severe reflux.
The money collected will go towards the out of pocket costs we will incur traveling to Baltimore to attend an evaluation at the Kennedy Krieger Institute of Pediatric Feeding Disorders in Maryland. Since this is out of network for insurance, the appointment alone will cost us over $2,300, not a small chunk of change considering Nathan\'s medical bills exceed $1,000 most months. The remainder would help pay for our flight, hotel stay for the two days we will be there, and for other travel expenses, such as dry ice to fly with his frozen milk. In addition, Nathan will probably qualify to stay as an inpatient at their facility, and we would incur additional out of network costs as a result.
Supporters can also help by forwarding this website to their friends and family on our behalf. Every penny helps, and we are so thankful that we have the loving support of our loved ones to help us fight for Nathan. We thank you so much for your help, we couldn\'t do it without each and every one of you and your loving thoughts, kind words and support.
Nathan is our one year old little boy. We knew something was different about Nathan since before he was born. He was small for gestational age in utero, had echogenic bowel, and was born with a single transverse palmar crease on his left hand. He was always in pain, could never be comforted, and refused to eat. When he did eat, he would choke. After several inpatient stays, testing, doctors appointments, surgeries and procedures, Nathan has been diagnosed with a laundry list of gastrointestinal issues and a neurological conditions. The bigger problem? His specialists in Boston are stumped. They can\'t link all of his issues together to come up with a cohesive diagnosis, and Nathan isn\'t responding to treatment. Some of Nathan\'s issues include: severe GERD, gastroparesis, hypersensitive gag reflex, sensory processing disorder, failure to thrive, oral aversion and total food refusal (meaning he will not eat anything by mouth), and anemia/vitamin/nutrient deficiencies. Due to this, he also never slept more than 30 minutes at any given time, even overnight, and would scream and/or cry for an average of 15 hours per day for more than 10 months. His lack of proper sleep and nutrition has affected his motor skill development, physical growth, and social skill development as well. The combination of all of these problems suggests that there is a larger diagnosis his physicians are missing, as it would be EXTREMELY rare for a \"typical\" child to exhibit all of these symptoms at the same time.
To give you a sense about just how rare we are talking, here are the numbers his physicians are giving us:
Prenatally:
*Small for gestational age - 9-10% of fetuses
*Echogenic bowel - Less than 0.2% of fetuses
Birth:
*Single transverse palmar crease (left hand) - out of 100 people with this condition, only 1.3 of them are genetically typical
*Severe feeding issues/Severe GERD requiring a feeding tube- less than 1% of typical babies
*Sensory processing disorder-between 3% and 15% of typical children will have some form, but rates are much, much higher for other groups of children
It\'s pretty clear that something is off, we just don\'t know what. We don\'t know what it would mean for Nathan and his future if he were diagnosed with another condition that ties all these problems together. But we certainly need to find out, and taking him to Baltimore is the next step we need to take.
As a result of his refusal to eat, Nathan has been fed by alternative methods/feeding him very, very small amounts every 15 minutes 24 hours per day since his birth. By the time he reached 9 months old, he was so underweight, not growing, and malnourished that he spent 10 days admitted at Massachusetts General Hospital for failure to thrive, and needed a surgically placed G tube in his stomach shortly after. That was his fourth hospital admission since birth for feeding difficulties/failure to thrive and/or severe reflux.
The money collected will go towards the out of pocket costs we will incur traveling to Baltimore to attend an evaluation at the Kennedy Krieger Institute of Pediatric Feeding Disorders in Maryland. Since this is out of network for insurance, the appointment alone will cost us over $2,300, not a small chunk of change considering Nathan\'s medical bills exceed $1,000 most months. The remainder would help pay for our flight, hotel stay for the two days we will be there, and for other travel expenses, such as dry ice to fly with his frozen milk. In addition, Nathan will probably qualify to stay as an inpatient at their facility, and we would incur additional out of network costs as a result.
Supporters can also help by forwarding this website to their friends and family on our behalf. Every penny helps, and we are so thankful that we have the loving support of our loved ones to help us fight for Nathan. We thank you so much for your help, we couldn\'t do it without each and every one of you and your loving thoughts, kind words and support.
Organizer
Matthew Voss
Organizer
Fremont, NH
