Wednesday, November 15th 2023, 7:34 pm
Twelve-year-old Grant has Duchenne, a devastating muscle disease with no cure, but apparently Grant didn’t get that memo, because this twelve-year-old is living his best life.
“It’s so crazy. There are so many kids at school that I don’t even know their names, but they know me,” said Grant Porter, who is living with Duchenne.
Duchenne is a form of muscular dystrophy, and an estimated fifteen thousand boys in the US and three hundred thousand worldwide are living with the incurable disease. “This one really starts showing signs when kids are really young, maybe about the age of five years old,” said Grant’s mother Leslie Porter.
The disease is progressive and there is no cure, but Grant isn’t affected by what studies say. “He wakes up every day with a smile on his face. Something like a huge disease that might affect people differently, he just chooses to look at it on the bright side,” said Leslie Porter.
Grant feels there are just bigger things to be concerned about. “I mean there are people who are poor, or don’t have any water,” said Grant.
Grant is really your typical twelve years, he loves LEGOS, playing video games, watching television, and drawing. “And I love Pokémon. I have many Pokémon cards,” said Grant.
Grant handles things pretty well, his family, however, admits initially it was tough. “It felt like we were physically hit with something,” said Leslie. “It took us months to be able to talk about this,” said Clint Porter, Grant’s dad.
The family found their lifeline through Cure Duchenne. “The gift that it gave was like winning the lottery because to walk in without hope and to leave with this whole new idea,” said Leslie.
Cure Duchenne is families offering many different aspects of support. “Reach out and get ideas on what we can do to be more active with our sons,” said Clint.
This Saturday, November 18 for families living with Duchenne there will be a family dinner at Mahogany Steakhouse Downtown. “The dinner sessions give us a chance as families to get together and talk,” said Leslie. “It helps you feel like everyone else that has Duchenne is together with you as a family and that you are not alone in this,” said Grant.
Now for more information about Duchenne and the family dinner visit www.cureduchenne.org
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