Shriners Hospitals for Children — Portland patient spreads awareness about arthrogryposis Renea discovered that her son Payton had arthrogryposis while she was pregnant with him.
Arthrogryposis multiplex congenita is a congenital disease that decreases joint flexibility, resulting in stiff joints and muscle weakness. Payton became a patient at Shriners Hospitals for Children — Portland when he was a year and a half old and has been a patient ever since.
“Shriners has helped Payton by providing his ankle foot orthotics (AFOs) and his crutches as he grows. They also worked with our insurance company to get a wheelchair for him at no cost to us,” says Renea of the range of care Payton has received from the Portland Shriners Hospital. “They are always welcoming to us and we have never had a bad experience with Shriners. The staff on every floor is so supportive and kind. Without Shriners, I don’t think Payton would be the outgoing, independent kid that he is today.”
As for Payton, he agrees that the staff are one of his favorite aspects of visiting the hospital, but more specifically his relationship with his physician, Dr. Sussman. “Dr. Sussman is my favorite because he’s been my doctor for 10 years and he’s helped me and encouraged me to continue to be who I am!”
Payton, a patient ambassador for the Portland Shriners Hospital, is incredibly involved in events and activities that benefit Shriners Hospitals for Children. Payton will be a team captain at the East West Shrine All-Star Football game for the second consecutive year this August, and is highly involved in the annual Shriners Run for a Child in Bend. However, Payton’s involvement extends far past sports. Last winter, Payton organized a toy drive that collected over 1,000 toys for patients at the Portland Shriners Hospital.
When asked about her son’s best qualities, Renea said “I’m not sure I can narrow it down to one - he has a ’drive’ that I can’t explain. He is always smiling, and wanting to do more, even if it’s challenging; he loves a good challenge. He is an inspiration to everyone he meets because he doesn’t let his disability be an inability.”
With Arthrogyposis Awareness Day on June 30th, Renea hopes that she and Payton can both spread awareness about arthogryposis, as well as put parents at ease about what the diagnosis of arthrogryposis means for their children. “Honestly, kids just need to be kids, regardless of any condition that affects their day to day lives. We have never told Payton that he can’t do something, because we want him to try everything that interests him.” As for Payton, he sees himself becoming a monster truck driver someday. But until then, he will continue to inspire his family, friends, and peers with his incredible spirit.
REDMOND PATIENT GARNERS AWARENESS ABOUT RARE DISEASE
WHAT: Redmond local and Shriners Hospitals for Children — Portland patient Payton is aiming to spread awareness about arthrogryposis on Arthrogryposis Awareness Day on June 30.
WHO: Both 11 year old Payton, and mother Renea are sharing their story and experience with Shriners Hospitals for Children — Portland in efforts to parents at ease about what the diagnosis of arthrogryposis means for their children.
WHEN: National Arthrogryposis Awareness Day is on June 30.
MORE: Shriners Hospitals for Children — Portland is changing lives every day through innovative pediatric specialty care, research and outstanding medical education. The Portland Shriners Hospital focuses on a wide range of pediatric orthopaedic conditions, from fractures to rare diseases and syndromes.
Services include inpatient and outpatient surgery; physical, occupational and speech therapy; orthotics and prosthetics; outpatient clinics; low radiation EOS Imaging System and a motion analysis center. All services are provided in a family-centered environment, regardless of the families' ability to pay.
Learn more at https://www.shrinershospitalsforchildren.org/Locations/portland