Free BBQ lunch and ‘frame-up’ party in Delano May 5
By Starrla Cray
DELANO, MN More than anything, Jeff Martineau wants to help his 9-year-old daughter, Isabella, who was born with spinal muscular atrophy (SMA).
One way he’s been doing this is through the Families of SMA (FSMA), a non-profit organization committed to finding treatments and a cure for this recessive genetic disease.
“There’s a lot of research going on a lot of breakthroughs,” he said.
Martineau, a land developer and real estate agent for the Delano area, is helping to organize construction of a new home in Delano’s Clover Springs development, which will be built and sold entirely to support the FSMA.
A kick-off and “frame-up” party will take place at the site (812 Watertown Ave. in Delano) Saturday, May 5 from 11 a.m. to 2 p.m.
Festivities for the public will include a free BBQ lunch, music, and the chance to win a variety of prizes from WCCO and the Minnesota Timberwolves. Everyone is welcome to watch as the house’s initial frame is set in place.
“We’ll have a huge tent with tables and chairs,” said Martineau’s business partner, Mark Duevel.
“This is the third ‘house for the cure’ Jeff and I have done together,” Duevel said.
Their first one (in Chaska) raised $50,000 for FSMA, and the second (in Buffalo) raised $100,000.
They are hoping to raise $100,000 through the sale of the Delano home, as well.
“The house is being built for a lot less than it would normally cost,” Duevel said, explaining that contractors are providing labor and materials at reduced rates.
Contractor Jim Cleary of Everlast Enterprises in Mound is offering his services at no charge, Martineau added.
The custom-built two-story home is expected to be completed and up for sale in June, with a list price of $299,000. It will have four bedrooms, three bathrooms, a three-car garage, and more than 2,500 finished square feet (not including the unfinished basement).
In the past, Martineau has developed other sites in Delano, such as Marsh Ridge, Woods Creek, and Maple Knoll.
He and his family lived in one of those homes temporarily, before getting a special handicapped-accessible place.
Living with SMA
Martineau’s daughter was diagnosed with Type II SMA when she was 15 months old.
According to her mother, Melissa Andrade, Isabella showed signs of muscle weakness as an infant.
“When she was sitting, we had to put pillows around her, because she would fall over,” Andrade said.
SMA is a motor neuron disease that affects muscles throughout the body.
According to the FSMA website, about 1 in 6,000 babies are affected, and about 1 in 40 people are genetic carriers.
“It’s the number-one genetic killer in children under age 2,” Duevel said. “Not many people know that.”
Of the four types of SMA, Type 1 is the most severe. In these cases, children are usually unable to lift their heads, and swallowing and feeding are difficult.
With Type II, Isabella has more strength than those with Type I, but still faces various complications.
“She will not ever stand or walk,” Martineau said.
Isabella undergoes daily respiratory treatments, and was in the hospital off and on last year for a total of 2.5 months.
Fortunately, like others with SMA, physical challenges haven’t hindered Isabella’s intellectual ability.
“She is cognitively advanced and does really well,” Martineau said.
As a third-grader in Orono, Isabella is a happy, social girl with several friends.
“She says her favorite class is PE [physical education],” Andrade laughed.
Finding a cure
Martineau is hopeful that, someday, a cure will be found for SMA to help his daughter and others like her.
Since it began in 1984, FSMA has funded more than $50 million for SMA research, drug development, and clinical trials.
To learn more, or to donate, go to the Families of SMA website.
“We appreciate any support you can give us,” Martineau said.
May 5 kick-off party
The public is encouraged to attend a kick-off party for the 2012 spinal muscular atrophy (SMA) “house for the cure.” Here are the details:
When: Saturday, May 5 from 11 a.m. to 2 p.m.
Where: 812 Watertown Ave. in Delano
What: The home’s initial frame will be set in place. Festivities will also include a BBQ lunch, music, and the chance to win a variety of prizes.
Why: All proceeds of the home sale will be donated to the Families of SMA, a non-profit that works to develop treatments and a cure for SMA.
Presenters: Coldwell Banker Burnet, Everlast Enterprises, WCCO radio, and Beacon Bank.