IAspurs
Life Member
I would like to invite all the bow hunters to the 3-D shoot we are having
for a 7 year old boy from a neighboring town. At 1.5 he was diagnosed with HIDS, Hyperimmunoglobulinemia D Sydrome. HIDS is a very rare disease. Payton Schultz is among 7 in the U.S. and 150 in the world who have this life threatening disease. He suffers from seizures, arthritis, mouth ulcers, swollen lymph nodes, stomach pain and a temperature of up to 107.4 degrees. Payton and his family have made countless trips to the University of Iowa Hospitals and Clinics, and they travel to Washington D.C. every 3 months. The shoot is May 26th 8am-2pm in washington Iowa at Clemons Creek archery range. I am also looking for donations of either money or merchendise to be raffled/auctioned at the event. Thank you for your time if you have any questions please give me a call at 319-430-2476 or pm me.
This is a news paper article that was writen a few years ago and tells Paytons story.
By: Julie Koehn
“You have to be tall to be a firefighter?” Four-year-old Payton Schultz asked his dad.
“You can be short,” his father, Waylon Schultz responds. Waylon, a volunteer firefighter in Ainsworth, Iowa, lies on the ground after returning from a mid-morning call. Payton giggles.
“You got to be tough,” his dad said. “Are you tough?”
“I can be tough,” Payton said triumphantly with a proud four-year-old grin across his face.
He has to be. At one and a half years old, Payton was diagnosed with HIDS, Hyperimmunoglobulinemia D Syndrome. One mutated chromosome causes him to have seizures, arthritis, mouth-ulcers, swollen lymph nodes – where the difference between his neck and his face can’t be distinguished – stomach pain, and a temperature of up to 107.4 degrees. Sometimes he goes seven days without eating because of the mouth ulcers.
He’s not allowed to get the typical vaccinations because he has too high of a risk of contracting the infections. It’s also imperative for him to stay as far away from illnesses as possible.
Yet Payton’s hopes and dreams of being a firefighter remain at the forefront of what’s on this child’s mind. He wants to be just like his dad, and he cheerfully walks around proudly sporting a bright red plastic firefighter hat.
***
Some days he’s a typical boy. He jumps off the couch and rolls on to the floor. He runs from one end of the living room to the other and pleads to wrestle with his dad. After his father, exhausted after a long day, declines, Payton resorts to a small Hawkeye football that was nestled in the corner of the room. After one throw and nearly drilling his sister, he decides it’s time to rest. He places his hand on his forehead and takes a deep breath.
Sometimes he places it over his heart instead and says, “My heart hurts.” And that makes this rambunctious four year old different from all the others.
***
Payton was born six weeks early and spent his first week of life in the NICU. One of his lungs had a hole in it, the other was collapsed and he suffered from an infection.
“Since the beginning he’s never known what it’s like to be healthy,” his mother said softly. “He doesn’t know life without pain.”
He first got sick in April of 2006 – when he was eight months old and no one could figure out what was wrong. He would get septic, and visits to the doctor became a monthly routine. Even after a trip to the Mayo Clinic, there were still no answers.
When it seemed like there were no other options, Doctor Polly Ferguson, M.D., in the Division of Rheumatology of the Department of Pediatrics at UIHC, flew out to the National Institute of Health (NIH) in Washington D.C. and presented Payton’s case. He was accepted into a study there, and the Schultz family flew out to Washington D.C. in April of 2007. The next day, Waylon and Amanda Schultz were informed their year-and-a-half-old child was among only 6 others in the U.S. and 150 in the world to have this life-threatening disease. Because it’s a rather new disorder, there isn’t a lot of long-term follow up on life expectancy but at this point it’s felt to be normal, according to Ferguson.
And thus, the beginning of a journey was in store for the Schultz family.
Since then, Payton and his family have made countless trips to the University of Iowa Hospitals and Clinics, and they travel to Washington D.C. to check in at the NIH every three months. Each visit he is assessed and is prescribed various experimental medications to see what diminishes the symptoms he encounters on a daily basis.
***
It’s noon, and it’s time for his medicine.
Initially, as his mother enters the room, holding two syringes and a small cup of liquid, Payton looks up from his cartoons. When he spots the syringes, he races out of the living room and a subtle whimper lingers in the hallway.
Amanda Schultz calmly places the medicine on the floor and disappears from the room to find him. She carries him back to where the shots are waiting and lays him on the floor as he flails his limbs and screams cries of terror. After several attempts to hold him down, the 29 year old finally straddles him on the floor. The screams get louder and the tears stream from all edges of his little brown eyes.
His father, who is lying on the floor next to Payton, reaches around and squeezes his hand, draping Payton’s blue blanket over him.
As the needle breaks the surface of the skin on his stomach, Payton shrieks louder. “I hate shots,” he screams. “I hate shots. I hate shots.” With each word, the fear in his voice escalates. And then he gets another one.
Amanda then pulls him on to her lap. As she tightly embraces the whimpering child, her eyes are glazed in sadness.
This is routine. He gets shots 3-4 days a week. The medications that consume all 34 pounds of him include: Humira, Anakinra, Naproxen, Morphine, Methotrexate, Folic Acid, Prednisone and Tylenol.
It doesn’t make the pain go away. And it doesn’t prevent the seizures from coming. The medication and injections are all experimental. “Kind of a waiting game,” Amanda said. “There is no medicine for this disease.”
When Payton has seizures, his eyes roll back and he shakes. He’s usually unresponsive for a couple minutes after that. Although the seizures are rarely life threatening, they are a rare part of the disease according to Ferguson. When he wakes up, he’s tired so he’ll sleep for a while. “Our oldest daughter has held him through many seizures,” Amanda said. “She just deals with it…She helps give shots. Sometimes I forget she’s only nine.”
Kaitlyn Schultz didn’t want to talk about what her little brother goes through, but the love she has for him is genuinely expressed as she goes to kiss him good night. She reaches in and he wraps his arms around her neck.
Sarah Schultz, who is seven, suffers from Mastocytoma and intense allergies, joins the two at the couch. Payton releases his left arm from Kaitlyn’s grasp and pulls the two in close to him. The three giggle and the girls disperse for bed.
***
Although at times the monstrous disease drains the life from Payton, it hasn’t broken up his family. This past September they had an opportunity to take a family vacation when they were sent to Disney World in Orlando, Fla., through the Make-A-Wish Foundation. It was the first time there were no financial stressors and no worries about what to do if Payton got sick because there were doctors there. “It was definitely well needed,” Amanda said. “It made us closer. It gave us time as a family.”
Even in their daily routine, they take out time to be together. They particularly indulge in each other’s company on Sundays. Some days they drive around, with no intentions of where they may end up. Other days they go for lunch at their grandmothers and come home to a movie and some popcorn.
It’s enough to take the edge off the stress in their lives for a little while. Not only are medical bills financial burdens, but the high school sweethearts who’ve held this family together are emotionally drained. Two years ago Amanda experienced a heart attack, and just last year she had a partial Nephrectomy, where part of one of her kidneys was removed. The doctors told her she needed to try and reduce some stress. Just before Christmas in 2008, Amanda decided her job as a nurse at the Washington County Hospital was what would have to go. Many times when Amanda would go to work she would get a call saying Payton wasn’t well.
***
When his episodes hit, they used to last seven to 14 days and they would come every six weeks. Now, they come every other weekend, but only last three to four days. Typically, he will start running a fever – where his temperature can go from 99 to 105 within 15 minutes, and he’ll get a rash. His eyes get really glossy and his mood will change – making him mean or aggravated. He becomes really tired and will spend a lot of time sleeping.
But whether he’s having a good or bad week, he frequently wakes up in the middle of the night with nightmares or aching joints. And when he does, Amanda is always there to massage his limbs and rock him back to sleep.
At times she will be up all night with him; other nights she’ll get three hours of sleep. She said it doesn’t bother her; it’s a bond her and her son share. Each night after the girls go to bed, Payton crawls up into her lap and curls up with his blue fleece Mickey blanket. As he clutches one of her hands and holds it close to his chest, she lightly strokes the top of his head until his heavy eyelids cave. And then she watches him.
“There’s nothing worse,” she said, “than watching your child go through pain every day.”
But she does, every day. She and her family don’t depend on the future because they don’t know what’s in store for them.
“It didn’t hit me until we got our wish,” Amanda said about the lack of hope for Payton’s future. “And looking at the wish, it says wishes are granted to children with terminal illnesses. And to see that word…then it hit me.” She pauses briefly to collect her thoughts.
“And it makes us sad because there are treatments out there for other diseases where it gives children hope, and it makes you happy for them, but it makes us sad for us…because we have nothing.”
Amanda becomes silent and looks down. Then her eyes drift over to where Payton is once again rolling around on the floor wrestling with his father.
“Because I don’t know what I’d do without him.”
for a 7 year old boy from a neighboring town. At 1.5 he was diagnosed with HIDS, Hyperimmunoglobulinemia D Sydrome. HIDS is a very rare disease. Payton Schultz is among 7 in the U.S. and 150 in the world who have this life threatening disease. He suffers from seizures, arthritis, mouth ulcers, swollen lymph nodes, stomach pain and a temperature of up to 107.4 degrees. Payton and his family have made countless trips to the University of Iowa Hospitals and Clinics, and they travel to Washington D.C. every 3 months. The shoot is May 26th 8am-2pm in washington Iowa at Clemons Creek archery range. I am also looking for donations of either money or merchendise to be raffled/auctioned at the event. Thank you for your time if you have any questions please give me a call at 319-430-2476 or pm me.
This is a news paper article that was writen a few years ago and tells Paytons story.
By: Julie Koehn
“You have to be tall to be a firefighter?” Four-year-old Payton Schultz asked his dad.
“You can be short,” his father, Waylon Schultz responds. Waylon, a volunteer firefighter in Ainsworth, Iowa, lies on the ground after returning from a mid-morning call. Payton giggles.
“You got to be tough,” his dad said. “Are you tough?”
“I can be tough,” Payton said triumphantly with a proud four-year-old grin across his face.
He has to be. At one and a half years old, Payton was diagnosed with HIDS, Hyperimmunoglobulinemia D Syndrome. One mutated chromosome causes him to have seizures, arthritis, mouth-ulcers, swollen lymph nodes – where the difference between his neck and his face can’t be distinguished – stomach pain, and a temperature of up to 107.4 degrees. Sometimes he goes seven days without eating because of the mouth ulcers.
He’s not allowed to get the typical vaccinations because he has too high of a risk of contracting the infections. It’s also imperative for him to stay as far away from illnesses as possible.
Yet Payton’s hopes and dreams of being a firefighter remain at the forefront of what’s on this child’s mind. He wants to be just like his dad, and he cheerfully walks around proudly sporting a bright red plastic firefighter hat.
***
Some days he’s a typical boy. He jumps off the couch and rolls on to the floor. He runs from one end of the living room to the other and pleads to wrestle with his dad. After his father, exhausted after a long day, declines, Payton resorts to a small Hawkeye football that was nestled in the corner of the room. After one throw and nearly drilling his sister, he decides it’s time to rest. He places his hand on his forehead and takes a deep breath.
Sometimes he places it over his heart instead and says, “My heart hurts.” And that makes this rambunctious four year old different from all the others.
***
Payton was born six weeks early and spent his first week of life in the NICU. One of his lungs had a hole in it, the other was collapsed and he suffered from an infection.
“Since the beginning he’s never known what it’s like to be healthy,” his mother said softly. “He doesn’t know life without pain.”
He first got sick in April of 2006 – when he was eight months old and no one could figure out what was wrong. He would get septic, and visits to the doctor became a monthly routine. Even after a trip to the Mayo Clinic, there were still no answers.
When it seemed like there were no other options, Doctor Polly Ferguson, M.D., in the Division of Rheumatology of the Department of Pediatrics at UIHC, flew out to the National Institute of Health (NIH) in Washington D.C. and presented Payton’s case. He was accepted into a study there, and the Schultz family flew out to Washington D.C. in April of 2007. The next day, Waylon and Amanda Schultz were informed their year-and-a-half-old child was among only 6 others in the U.S. and 150 in the world to have this life-threatening disease. Because it’s a rather new disorder, there isn’t a lot of long-term follow up on life expectancy but at this point it’s felt to be normal, according to Ferguson.
And thus, the beginning of a journey was in store for the Schultz family.
Since then, Payton and his family have made countless trips to the University of Iowa Hospitals and Clinics, and they travel to Washington D.C. to check in at the NIH every three months. Each visit he is assessed and is prescribed various experimental medications to see what diminishes the symptoms he encounters on a daily basis.
***
It’s noon, and it’s time for his medicine.
Initially, as his mother enters the room, holding two syringes and a small cup of liquid, Payton looks up from his cartoons. When he spots the syringes, he races out of the living room and a subtle whimper lingers in the hallway.
Amanda Schultz calmly places the medicine on the floor and disappears from the room to find him. She carries him back to where the shots are waiting and lays him on the floor as he flails his limbs and screams cries of terror. After several attempts to hold him down, the 29 year old finally straddles him on the floor. The screams get louder and the tears stream from all edges of his little brown eyes.
His father, who is lying on the floor next to Payton, reaches around and squeezes his hand, draping Payton’s blue blanket over him.
As the needle breaks the surface of the skin on his stomach, Payton shrieks louder. “I hate shots,” he screams. “I hate shots. I hate shots.” With each word, the fear in his voice escalates. And then he gets another one.
Amanda then pulls him on to her lap. As she tightly embraces the whimpering child, her eyes are glazed in sadness.
This is routine. He gets shots 3-4 days a week. The medications that consume all 34 pounds of him include: Humira, Anakinra, Naproxen, Morphine, Methotrexate, Folic Acid, Prednisone and Tylenol.
It doesn’t make the pain go away. And it doesn’t prevent the seizures from coming. The medication and injections are all experimental. “Kind of a waiting game,” Amanda said. “There is no medicine for this disease.”
When Payton has seizures, his eyes roll back and he shakes. He’s usually unresponsive for a couple minutes after that. Although the seizures are rarely life threatening, they are a rare part of the disease according to Ferguson. When he wakes up, he’s tired so he’ll sleep for a while. “Our oldest daughter has held him through many seizures,” Amanda said. “She just deals with it…She helps give shots. Sometimes I forget she’s only nine.”
Kaitlyn Schultz didn’t want to talk about what her little brother goes through, but the love she has for him is genuinely expressed as she goes to kiss him good night. She reaches in and he wraps his arms around her neck.
Sarah Schultz, who is seven, suffers from Mastocytoma and intense allergies, joins the two at the couch. Payton releases his left arm from Kaitlyn’s grasp and pulls the two in close to him. The three giggle and the girls disperse for bed.
***
Although at times the monstrous disease drains the life from Payton, it hasn’t broken up his family. This past September they had an opportunity to take a family vacation when they were sent to Disney World in Orlando, Fla., through the Make-A-Wish Foundation. It was the first time there were no financial stressors and no worries about what to do if Payton got sick because there were doctors there. “It was definitely well needed,” Amanda said. “It made us closer. It gave us time as a family.”
Even in their daily routine, they take out time to be together. They particularly indulge in each other’s company on Sundays. Some days they drive around, with no intentions of where they may end up. Other days they go for lunch at their grandmothers and come home to a movie and some popcorn.
It’s enough to take the edge off the stress in their lives for a little while. Not only are medical bills financial burdens, but the high school sweethearts who’ve held this family together are emotionally drained. Two years ago Amanda experienced a heart attack, and just last year she had a partial Nephrectomy, where part of one of her kidneys was removed. The doctors told her she needed to try and reduce some stress. Just before Christmas in 2008, Amanda decided her job as a nurse at the Washington County Hospital was what would have to go. Many times when Amanda would go to work she would get a call saying Payton wasn’t well.
***
When his episodes hit, they used to last seven to 14 days and they would come every six weeks. Now, they come every other weekend, but only last three to four days. Typically, he will start running a fever – where his temperature can go from 99 to 105 within 15 minutes, and he’ll get a rash. His eyes get really glossy and his mood will change – making him mean or aggravated. He becomes really tired and will spend a lot of time sleeping.
But whether he’s having a good or bad week, he frequently wakes up in the middle of the night with nightmares or aching joints. And when he does, Amanda is always there to massage his limbs and rock him back to sleep.
At times she will be up all night with him; other nights she’ll get three hours of sleep. She said it doesn’t bother her; it’s a bond her and her son share. Each night after the girls go to bed, Payton crawls up into her lap and curls up with his blue fleece Mickey blanket. As he clutches one of her hands and holds it close to his chest, she lightly strokes the top of his head until his heavy eyelids cave. And then she watches him.
“There’s nothing worse,” she said, “than watching your child go through pain every day.”
But she does, every day. She and her family don’t depend on the future because they don’t know what’s in store for them.
“It didn’t hit me until we got our wish,” Amanda said about the lack of hope for Payton’s future. “And looking at the wish, it says wishes are granted to children with terminal illnesses. And to see that word…then it hit me.” She pauses briefly to collect her thoughts.
“And it makes us sad because there are treatments out there for other diseases where it gives children hope, and it makes you happy for them, but it makes us sad for us…because we have nothing.”
Amanda becomes silent and looks down. Then her eyes drift over to where Payton is once again rolling around on the floor wrestling with his father.
“Because I don’t know what I’d do without him.”
