SABINE PASS, Texas — Monday is International Alagille Syndrome Awareness Day and a Southeast Texas school helped an area family raise awareness and educate others about the rare disorder.
Bryston Mascitelli was diagnosed with Alagille Syndrome when he was just 10 months old. At the time of his diagnosis, his mother Britney Arnett had never heard of the syndrome.
"I would like for other people to be aware of this for reasons to hopefully inspire other kids," Arnett said. "And to look at Bryston and see that you can still go through life even with this syndrome that he has and face the world like any other kid."
Alagille Syndrome is a rare genetic disorder, affecting one in every 30,000 births worldwide. The syndrome has no current cure and can affect a person’s heart, liver, kidneys, eyes or skeletal system.
Mascitelli’s affects his liver, kidneys and heart. The now 14-year-old and his mother are working to raise awareness about Alagille and educate others in case someone they know has it.
The Sabine Pass Independent School District held an event that let Mascitelli educate his fellow students about his syndrome. Different events were done with different grade levels as Mascitelli explained what Alagille Syndrome was and how it affects his daily life.
"If I go play outside or something and if I just run for a little bit, I get out of breath really easily and I just don't like that," Mascitelli said. "I really want to play football, but I can't because of that."
Staff and students described the eighth grader as bright and positive child that never complains about his battle.
“He just such a good kid he deserves all this and more, and I hope they find something to help all these kids go through this,” Sarah Cropper, coach at Sabine Pass ISD, said
Mascitelli is in stage 2 renal failure and has a congenital heart defect. He has to go to doctor’s appointments every three to six months and has to have constant bloodwork done.
“He has to super careful whenever he is playing sports,” Cropper said. “He wants to play football but can’t, because he can’t be hit in the head, because he will have to do a brain MRI.”
Cropper described Mascitelli as a positive child who lives life to the fullest. The coach said he does not let anything hold him back.
“He wants to be treated normal,” Cropper said. “He knows his limits. He does not push it but wants to try. He won’t talk about it unless you ask him. He never asks, ‘Why me? Why this?’ He just keeps on.”
Cropper said Mascitelli was nervous about the event at first. However, the coach felt that the event went well and the students enjoyed it and asked questions.
The idea for this event began with eight shirts that staff wore at Monday's event. Eight shirts turned into 30.
Cropper said while 30 may not sound like a large number, Mascitelli was shocked and excited to learn that 30 people wanted to wear the shirts made in support of him.
The coach reached out to the Alagille Alliance community and was given the official Alagilles Alliance logo to put on the shirts.
The Alagille Alliance community is going to add a link on their website, so that those that want to can buy the shirts Sabine Pass ISD made can. All money will go toward raising awareness for Alagille Syndrome.
“It needs to brought up and known about,” Cropper said.
Cropper encourages people to visit the website because it has a great deal of information concerning Alagille that most people do not know about.
