“The fight's not over”: Local Muscular Dystrophy Assoc. Ambassad - KSBY.com | San Luis Obispo and Santa Barbara Area News

“The fight's not over”: Local Muscular Dystrophy Assoc. Ambassador dies from incurable disease

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For more than 60 years, community members have participated in “Fill the Boot,” a campaign put on by fire stations to raise money for the Muscular Dystrophy Association.

Last month, the Central Coast lost a young man who was impacted by this disease. Fifteen-year-old Lucas Appleton of Nipomo was diagnosed with a form of MD known as Friedreich’s Ataxia when he was a young boy.

The fight against MD has been supported by Fill the Boot campaigns, which happen each November. Anthony Morales, the president of Santa Maria Firefighters Local 2020, says the partnership has been ongoing since 1954, raising $600 million since the beginning.

Locally, those efforts have gone a long way.

“The funds that are raised locally, the $18,000 this last year and the $16,000 the previous year, all those funds are raised here locally and stay locally for the children in this area,” Morales said.

He says the money has also been spent for research and kids like Lucas.

“Lucas Appleton, who was one of our children who was at our Fill the Boot(s), has been to our station numerous times. Our fundraising efforts had helped him and are helping others as we move forward,” Morales said.

Casandra Johnson, Lucas’ mom, says her son was diagnosed with the disease when he 8 ½ years old. After that, Team Lucas was formed to raise money for research.

“We started recognizing that there were difficulties in balance and coordination when he was in pre-school,” Johnson said.

Although Lucas became wheelchair bound, it didn’t stop him from living a normal childhood, going to school, being a Boy Scout and giving back.

“Lucas became a local ambassador for the MDA,” Johnson said. “We participated in the Fill the Boot campaigns.”

From the Paso Robles Fire Department to fire stations in southern Santa Barbara County, Lucas participated in countless campaigns, positively impacting everyone he met.

“I'm blessed beyond measure,” Johnson said. “Because I got to be his mom.”

After a long battle with MD, Lucas passed away on Jan. 23, surrounded by family. Though he's not physically present, Team Lucas lives on and Johnson will continue to be an advocate for the Muscular Dystrophy Association.

“The fight's not over,” Johnson said. “The fight's not over by any means.”

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