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Community helps stricken family

As much as it is needed, Brian and Mende Machado, of Tuolumne, are embarrassed at the outpouring of support they are getting from the community.

A benefit sale is going on right now on Sonoraville Buys and Sells, a group on Facebook for people from the Sonora area. A new friend who recently met the family, Corie Herbert-Thorsland, of Tuolumne, has posted two albums of online sale items to benefit the family.

She is also one of the organizers of a rummage sale that will be held from 10 a.m. to 3 p.m. Jan. 26 at Tuolumne Veterans Memorial Hall and is looking for a location to hold a benefit dinner and silent auction in February. For further information or to help, call Herbert-Thorsland at 928-4233.

The Machados like to pay their own way, but the challenges they face would be tough for any family — one seriously disabled son with Coffin-Lowry syndrome, two teenagers and the father, all with diabetes, and the mother with multiple sclerosis.

Brian Machado works full-time as assistant security manager at Black Oak Casino, so he has medical insurance, but there are deductibles and many other expenses that have to be paid. 

He is also a 10-year volunteer with the Tuolumne Fire Protection District and a member of the district’s board of directors.

Mende Machado is foregoing treatment for her multiple sclerosis to be sure there is enough money for her children’s medicine, which costs hundreds of dollars a month, along with other expenses. She also sells things out of her garage to help bring in a little extra money.

The more people learn about what the family is going through, the more they want to help, Herbert-Thorsland said.

Mende Machado said the outpouring of love began when she posted a video of her youngest son with Santa Claus online.

“It ended up going from Sonoraville to Facebook, and I’ve even heard it was sent to the ‘Ellen Show,’ ‘Oprah’ and ‘The Today Show,’” Mende said.

“I can’t find the words to even begin to tell you how all of this has made us feel,” she said. “We are very grateful, but super humble at the same time. We are super blessed.”

The Machados have been married for 19 years. They have three children.

Kymberlee, 17, graduated from Summerville High School’s independent study program instead of attending regular classes because of health issues related to her diabetes.

Matthew, 16, is a sophomore at Summerville High and a defensive lineman on the Summerville Bears football team. He will be on independent study for the rest of the school year in an effort to control his diabetes; then hopes to return to the main campus for the next school year.

“Teenagers have a really hard time controlling the disease,” Mende Machado said. “Hopefully, they will both get everything regulated soon.”

Cody, 9, is in the third grade at Summerville Elementary School.

He has had health problems since before he was born. He had to be delivered at Stanford University Medical Center in Palo Alto because of kidney problems and was diagnosed with Coffin-Lowry syndrome, was diagnosed with Coffin-Lowry syndrome, a genetic disorder that causes a variety of severe mental and physical problems, when he was almost 2.

Coffin-Lowry syndrome is characterized by mental disabilities, low muscle tone, differences of the head, face and skeleton, and massive weight gain. It greatly affects the spine, which worsens as the victim gets older.

Cody can still walk, but is expected to be in a wheelchair eventually and need steel rods to keep his spine straight. His mother said a doctor told her last year that it is rare for someone with the syndrome to live into the double digits.

The disease itself is very rare, she said. Cody is one of four children in California who have it, and two of the others are brothers.

“We can tell he is declining,” she said, “but he enjoys every day, and we cherish him. He is the biggest blessing we have ever received. He taught me a whole lot about life.”

She said she and her husband like to take care of their own problems.

“We are very humbled by all of this help,” she said. “We don’t want people to think differently about us. We aren’t poor, just struggling and having a real hard time getting our heads above water right now, but we are working at coming up with a game plan.”



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Sun, 23 Nov 2014 11:56:13 -0800