FREEPORT — Alex Strout knows a lot about growth.
When he graduated June 10 from Freeport High School, he left a legacy of emotional growth that measures up against the rare genetic syndrome that causes his continued physical growth.
Last fall, Strout was diagnosed with hamartoma tumor syndrome, commonly called Pten, a rare genetic condition he has lived with since birth. Simply put, his body does not stop growing, and he has the scars to prove it.
The bridge of Strout’s nose is reconstructed from a portion of one of two ribs removed from his body. Behind his blond hair and ears are semi-circular scars, remnants of reconstructive surgeries where doctors removed, then re-attached his ears.
He has also left a paper trail of his emotional growth in the form a pamphlet providing tips for parents and students needing special educational services. Strout estimated he missed almost 1,500 classes while enduring 25 surgeries during his school years.
“I spent too much time feeling like I was either lost in the system or that I was a lost cause,” Strout wrote.
Since he was a young boy, Alex and his mother, Kristina Strout, knew he was different. Weighing 110 pounds at age 5 will set a boy apart.
“We were shopping in the men’s section when he was 10,” she said.
After his most recent ear reconstruction surgery in Boston, his tissues grew so quickly his doctors referred him to geneticists at Massachusetts General Hospital in Boston.
That led to the diagnosis of Pten. Alex may be one of about 150 people in the world who has the syndrome, his mother said.
Strout graduated on time with his class and plans to attend Southern Maine Community College in South Portland in the fall. He and his mother pushed hard to keep pace with his studies through online courses, a tutor and an individual plan of study developed with the Regional School Unit 5 Special Services Department.
Freeport High School Principal Bob Strong said he started at the school the same year Strout entered ninth grade.
“I have been in situations while students missed a part of one year, but not in a situation where someone is facing similar situations over the course of their four years,” Strong said.
The Strouts were proactive, letting administrators and teachers know when Alex would be missing school. He took online courses while recovering from surgeries, and played an active role in the development of his individualized educational plan (commonly called an IEP) and getting a tutor to stay caught up.
Strong said school staff has always worked hard to ensure Strout could continue to learn as he recovered in hospital beds or at home.
“The support they provided Alex showed the community sense and desire to go above and beyond,” Strong said.
Strout’s mother advocated for her son’s needs, and Strong said Alex has become his own advocate in the last two years.
“He is soft-spoken, but people listen when he speaks,” Strong said. “If he came in to speak with me, I knew it was valid.”
Strout’s pamphlet, “The AMS Guide,” is designed in sections titled to match his initials, such as “Actively Managing Solutions, and “Absolutely Must Share.”
Drawn from his personal experiences, the guide is relevant enough for Director of Special Services Dominic DePatsy to keep at the district office for referral to parents and student.
Developing the pamphlet was Strout’s senior project, and he presented it May 30 at a student assembly. His spoken and written words are a measure of his growth as a student leader, his mother and Strong said.
“It is amazing how much he knows about his situation,” Strong said.
In addressing his own needs and coping with so much time out of the classroom and his home, Kristina Strout said her son has developed more compassion for his friends and family. Past tormentors are now friends, and his advice is sought, his mother said.
“He has no patience for the little stuff, but a huge amount of compassion for people with real problems,” she said.
Pten syndrome carries additional risks, including increased chances for thyroid, colon or breast cancer. Strout routinely develops benign growths on his skin and has already had screenings like colonoscopies that his peers would not normally expect for another 30 years.
Between screenings and followup appointments, he and his mother estimate he will see specialists about once a month for the rest of his life. The Boston doctors and clinicians have developed their own bonds with Alex because of the rarity of his condition.
“He’s why they went to medical school,” Kristina Strout said.
Strong said the absence of self pity is what stands out in Strout’s quiet determination, while Strout said his medical struggles have given him perspective on life’s problems.
“You have to keep things loose or you will go crazy in your head,” he said.
Alex Strout, left, and his mother, Kristina Strout, pushed to get the education services Alex needed to graduate with his class at Freeport High School.