Students living with Marfan syndrome are more than their diagnoses – they are vibrant young people working hard to thrive alongside their peers. But understanding can be hard to find in classroom settings – not just when it comes to connecting with fellow students, but also sometimes among educators who have never heard of Marfan syndrome.
Like most young people, kids and teens with genetic aortic and vascular conditions have diverse interests, hobbies, concerns, and experiences. That’s why it’s so important for educators to know that Marfan syndrome can impact the whole person – and that means it can also impact what students experience during an average school day, both physically and emotionally.
Monty with her doctor, whom she brought to school to educate students; Monty decked out to raise awareness.
Student Monty LaBelle – who lives with Marfan syndrome – and teacher Lindsey Massey, both of Massachusetts, teamed up to spread awareness and created a new quick resource with the aim of helping more educators understand everything from the potential for emergency situations to common vision issues and more complex aspects of Marfan like fatigue. The resource also points out that kids with Marfan are unique: some will present with obvious physical signs like tall stature and long thin limbs, but others like Monty may have less visible outward signs, yet live with multiple body systems impacted by the condition.
Massey knew that for most educators, time is at premium. She wanted to create something real teachers could use to get up to speed on Marfan syndrome. The document she and Monty created is deliberately short and sweet: educators can use it as something of a “quick start” supplement to the Marfan Foundation’s full information for families and educators.
“I wanted Monty’s future teachers to understand not only how Marfan syndrome may impact her as a student, but also who she is beyond her diagnosis—a girl who loves activities and experiences just like her peers,” said Massey.
Monty spreads awareness among her peers and her teachers in ongoing ways. She has presented during Marfan Awareness Month alongside her doctor to help more people her age understand that she’s a kid who loves doing many different things – but she also has to find specific and safe ways to thrive alongside Marfan syndrome during school and related activities.
“I was also excited that my school recognized Marfan Awareness in February and had it on the Friday Funday dress up day,” said Monty.
Monty’s presentations to her peers got the attention of her school’s superintendent, which resulted in him allowing a flyer for the Marfan walk to be shared across her school district.
Monty has created multiple awareness opportunities and fundraisers at her school, and her family supports the Boston Walk for Victory
“I was nervous, excited and scared to present to him. But he made me feel at ease and asked me a lot of questions,” said Monty. “I was excited and happy when he said that he would approve the flyer for the Marfan Walk to the entire district,” said Monty.
Likewise, Monty was really proud and excited to go to Boston and receive a Marfan Awareness proclamation, which she shared with her classmates and teachers.
The Marfan Foundation is working with Massey, Monty, and Monty’s family to expand the awareness they’ve created to reach educators, school nurses, parents, and peer students around the country. We are so grateful for all that Monty, her family, and Lindsey have done – and continue to do – to ensure every young person with Marfan has the chance to enjoy optimal experiences at school.
“Teachers don’t need to be experts in Marfan syndrome, but they do need to understand how it can impact a student’s school experience. I want teachers to see the child first—not the diagnosis—and to understand that with the right knowledge, communication, and support, students with Marfan can thrive in the classroom alongside their peers,” said Massey.
You can find, download and share Marfan in the Classroom: Meet Monty here:
You can find the Marfan Foundation’s full Parent Toolkit – including School Concerns – here: Parent Toolkit – Marfan Foundation
The Marfan Foundation drives research, education and support – and builds community – to improve outcomes, save lives and empower all people to thrive who are living with Marfan, Loeys-Dietz, Vascular Ehlers-Danlos syndromes, and related genetic aortic and vascular conditions.