Connect Issues Winter 2021

MARFALOUS BECKETT In 2019, Brandy Hotchkiss, of Arizona, headed to the eye doctor with her son, Beckett, who was having trouble seeing at school. After examining him for about thirty seconds, the doctor identified a problem with Beckett’s lenses, said that he probably had Marfan syndrome, and rattled off a list of specialists Beckett would need to see. “I thought I was just going in get him new glasses!” said Brandy.

After many doctor visits, Beckett’s diagnosis of Marfan syndrome was confirmed and the family connected with The Marfan Foundation and other Phoenix-area families to learn more about life with this condition. Among the resources they found, Walk for Victory proved to be the perfect way for Beckett to embrace his new community. Beckett, who is the only one in his family with Marfan, didn’t just enjoy the Phoenix Walk for Victory, he wanted to WIN. At six-years-old, he wanted to raise the most money! Leading up to the Phoenix Walk, he would ask Brandy each morning how much another top team, Jerrod’s Cubbies, had raised. “We need to beat them!” he’d say. After Beckett’s Coyotes won Top Fundraising Team in 2019, the Cubbies told Beckett they were aiming for first again in the coming year. Beckett fired up his fundraising early and has already raised $20,000 ahead of the Phoenix Walk in 2021. According to Brandy, the new incentive prizes got him really excited, too. Beckett makes calls to family to ask for their support and helps come up with what to write on his fundraising page. He picked his team name – Beckett's Coyotes – and their green tie dye t-shirts. “He’s so proud of it. He wears it to school, probably too much,” said Brandy. The Walk for Victory, and the park where it is held in Phoenix, now hold such a special place in the family’s heart that they decided to get a tree planted there. This February, a Sisso tree will be planted at Chaparral Park in a spot where they can add a bench and some additional trees in the future. Not coincidentally, the Sisso tree is known for its quick growth and long, slender branches. Beckett calls himself the Marfan Man and loves to use his “go go Marfan arm” to reach things for his two younger brothers. “It’s funny because the kind of tree we picked, it grows like a Marfan Man, like Beckett.” said Brandy. "Kids are so resilient. When the eye doctor started spitting out all that information, I was like WHOA! Slow down! But Beckett has embraced his Marfan Man superpowers and however we can help, we want to do that.”

Hi, I’m the Marfalous Beckett. I was diagnosed with Marfan syndrome when I was six years old. My eye doctor was able to tell that my lenses were dislocated and that started the millions of doctor appointments with various eye surgeons/retina specialists, genetic counselors, and cardiology specialists which lead to my confirmed diagnosis. In November 2019, I had my lenses removed and now I wear contacts and glasses with bifocals to help me see. I am thankful for my early diagnosis and, even though I know I may have a long road ahead, I’m staying positive and dedicated to help fight for victory!

If you’d like to support Beckett’s Coyotes visit: Give.Marfan.org/team/325704

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Winter 2021