Golf tourney held to remember Barbara MacDonald, support her son Alan

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In the summer of 2006, MacDonald was one of the youngest people ever to be diagnosed with ALS (Amyotrophic lateral sclerosis), which is also known as Lou Gehrig's disease.

“I try to keep it in the back of my mind,” Alan MacDonald said this week. “The average lifespan for someone with ALS is five years (from the onset of the disease). I’m 27 years old. My goals are to go on one family trip to Disney with my girls and see them get on a school bus. 

I was at Mass General Hospital and they said there’s only one other (ALS) patient that Mass General knows of that’s younger than me, right now.”

On Saturday, Aug. 25, the Babs’ Buddies charitable foundation, which was named for Alan’s mother Barbara MacDonald, will host its third annual golf tournament and dinner and dance at the Rockland Golf Course. 

The tourney is held in memory of Barbara, who passed away from ALS in 2004 at the age of 41. Barbara’s mother also died of the disease when she was 39. 

Both of the women died within two years of their diagnoses.

Proceeds from this year’s golf tournament will help cover Alan MacDonald’s medical and prescription bills not covered by health insurance, as well as a Disney trip for him and his girls. 

Barbara MacDonald’s wheelchair alone cost $30,000, not including the voice activator she used to operate the machine. Alan’s medical equipment is expected to cost even more. He has three daughters, Alexxys, 4, Anabelle, 2, and Lily, 2. 

There’s a 50 percent chance Alan MacDonald can pass on the disease to his girls, although some ALS carriers never show symptoms.

According to the ALS website, ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, inhibiting the use of muscles throughout the body. Motor neurons die and voluntary muscle action is progressively affected. 

Patients in the later stages of the disease may become totally paralyzed. The degeneration of the motor neurons eventually leads to death.

“If you ever have to watch someone die of this disease, you basically deteriorate from the inside, but your brain stays intact, so you’re a prisoner in your own body,” MacDonald said. 

“They said that in a book I read, and it seems that way to me.”

“We were always high school sweet hearts,” he said. “She is my legs because I just can’t keep getting in and out of bed. She’ll get up and make the bottles (of formula for the babies).” 

Together, Alan and Jen attended classes at Mass General Hospital with the hopes of conceiving his youngest child and limiting the chances the baby would develop ALS. 

They were considering artificially insemination, but after the sixth class the couple learned that Hill was five weeks pregnant.   Alan’s mother Barbara was thrilled when his youngest daughter Lily was born, he said.

“I called her at 11:30 at night and told her I had my first daughter,” he said. “Probably 10 minutes after the baby was born she was at the hospital with crutches. 

That shows what kind of a grandmother she was. She had a closet full of baby clothes before the baby was even born. 

She was a proud grandmother. Everyone always said I looked like my mom. She was the greatest person. 

She helped me graduate high school. I wouldn’t have been able to do a lot of stuff without her. She was always there for me.” 

“I pretty much was outgoing,” he said. “I liked to go up to the Rockland Eagles and play horseshoes. I always liked to go out with friends. 

Now, I don’t do much. I find myself just playing video games. I can’t walk that far so I don’t want to go. I can walk 200 to 250 yards then I have to use a walker because my legs get weak. It keeps getting worse and worse.” 

MacDonald said he often uses his newborn’s stroller instead of a walker while in public. His breathing capacity decreased from 98 percent to 72 percent and he now uses a machine three times a day to clear his lungs.

“I find myself coughing a lot and have shortness of breath, he said. “I don’t sleep. I feel different all the time. I think my kids pretty much keep me going. If I didn’t have my kids, I think I would be a lot worse off.” 

Brandie Light, Alan’s cousin who’s one of the event’s organizers, said the family has struggled with the disease for three generations.

“It’s devastating,” said Light. “We’re a close family. It happened so fast, it happened so quickly, it’s sad. (MacDonald) has a big love of life like his mom did. It’s hard. It’s hard for everybody to deal with. He’s fun loving and funny,” Light said. “He’s a great dad and a good friend. He’d do anything for anybody. 

He’s funny, a jokester just like his mom. My aunt (Barbara MacDonald) always loved a good prank, and Alan is the same way. 

He’s in good spirits even though he has ALS, and the whole reason we’re trying to do this, this year, is so he can take his children to Disney and have some good memories.”

Registration for the tourney will be held at 12 pm., and the tournament is to begin at 1 p.m. with a shotgun start. 

A dinner and dance will follow at approximately 6 p.m.

Local venders have donated items for the tournament’s raffle, including gift certificates. 

There will be sports memorabilia including an autographed Red Sox baseball, a Celtics basketball and a Boston Bruins puck.