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What you need to know for 10/19/2017

Helpers rally for Milton brothers with Duchenne muscular dystrophy

Helpers rally for Milton brothers with Duchenne muscular dystrophy

'It’s a story that just gets you right in the gut — 2 young boys, same disease, same family'
Helpers rally for Milton brothers with Duchenne muscular dystrophy
Peter Frolish, 17, helps volunteers remove old roofing.
Photographer: ERICA MILLER

With a few extra feet of floor space, Alex and Tina Frolish will finally be able to stop manually lifting their teenage sons in and out of bed each day.

The family has dealt with the day-to-day challenges of having two children with Duchenne muscular dystrophy since their sons Peter, 17, and Phillip, 16, were babies.

Complaints aren’t part of their vocabulary.

“My kids are normal to me,” Tina Frolish said. “If I had another kid and there was nothing wrong with them, I honestly wouldn’t know what to do with them.”

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John Frolish, left, and Mike Prime help put on the roofing to an addition of the Alex and Tina Frolish’s home in Milton, to help with their two sons Peter and Phillip. (Erica Miller)

Still, the family is looking forward to having more room in the boys’ bedroom — enough to accommodate a mechanical lift. Because of Duchenne, a genetic disorder that progressively weakens muscle, Peter and Phillip lack the strength to execute a high-five, much less sit up in bed and transfer to a wheelchair.

“It’s a story that just gets you right in the gut — two young boys, same disease, same family,” said Michelle Larkin, executive director of Rebuilding Together Saratoga County.

Peter Frolish was diagnosed with Duchenne muscular dystrophy when he was just over a year old, his mother said. She was pregnant with Phillip at the time. He was diagnosed around 8 or 9 months old. In addition, both boys were diagnosed with autism at age 2, Tina Frolish said.

Rebuilding Together is managing a renovation project for the family that will add 538 square feet to their Milton home, including a bigger bedroom for the boys and a larger bathroom with a waterproof floor.

“We have had wonderful, wonderful response from contractors donating their services,” Larkin said. They include Gilbane Building Co. and Pompa Bros.

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Alex Frolish stands in the room which would be for their sons as friends and family members help place new roofing on their home in Milton. (Erica Miller)

Rebuilding Together provides home maintenance and repairs for low-income homeowners, including the elderly and people with disabilities. This addition is the local organization’s largest building project to date.

The Frolishes are a dual-income family — Tina is a licensed practical nurse with Saratoga Springs City School District and Alex is a custodian at the district’s Dorothy Nolan Elementary School — but Rebuilding Together was able to help them because the family is financing part of the project themselves. Money raised by former Saratoga Springs football player Cory McArthur and the varsity football and basketball teams also will help foot the bill.

The addition will make daily life a little easier for the teens, who call themselves the Duchenne Duo, and their parents.

Both boys have been wheelchair-bound since age 10, and the Frolishes have been making changes to their ranch-style home for several years. They removed the carpet and put in laminate flooring for easier rolling, and then installed a ramp to the front door.

They renovated the bathroom about three years ago, removing the tub and installing a shower that makes it a little easier to bathe the boys.

One major problem that remained was the small size of the teens’ shared bedroom, which lacked enough floor space between the beds to accommodate a Hoyer mechanical lift.

The addition, which has been in the planning stages for two years and broke ground in late August, will fix that. It also will include more exterior doors, including one from the boys’ bedroom to a to-be-constructed outdoor deck.

Currently the home only has one exterior door the boys can use with their chairs. Tina Frolish sees this renovation as necessary for taking care of her boys for life.

“We know that down the road they’re going to need more and more things,” she said. “There’s no way I could put them in a long-term care facility.”

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Al Frolish, of Saratoga, volunteers his time to help family as they put on the roofing to an addition of the Alex and Tina Frolish’s home in Milton, to help with their two sons Peter, in front, and Phillip. (Erica Miller)

There is no cure for Duchenne, and the teens’ only active treatment is weekly physical therapy. Their primary treatment, though informal, is to enjoy life.

“If you’re not active when you have an illness like this, it’s going to not be a good thing,” Tina Frolish said. “I feel that the more active you are in life, the more you’re going to enjoy life.”

Peter and Phillip have followed their parents’ lead and adopted “live life to the fullest” as their mantra. Peter hosts Toga Hot Seat, a website/blog that features video clips of high school sports and events.

Peter is the “boss” who tells his father what to do for the website, Alex Frolish said. They attend every high school football game and participate in unified bowling and basketball, which are adapted for their disabilities.

The teens enjoy bowling at Saratoga Strike Zone.

“They save me money when I go bowling because I don’t have to buy them shoes,” Tina Frolish joked.

Like many teenage boys, Peter and Phillip are video game and comic book fans, and enjoy watching movies, listening to music and interacting on social media. This summer they saw country music stars Luke Bryan and Zac Brown Band in concert.

“They do normal things that normal teenagers do,” Tina Frolish said.

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