By Seth Daniel
Don’t hold it against him, but Mike Robbins is a New York Yankees fan.
Despite being the newest resident of the newly expanded Leonard Florence Center for Living (LFCFL) ALS Home, the Staten Island native brought with him his Yankees gear, but a great new appreciation for Boston and the community of Chelsea – even if the Red Sox don’t exactly appeal to him just yet.
“I rolled in here with a Red Sox hat on so they wouldn’t ask me to leave,” he said with a laugh at the new home recently. “I figured I’d keep it on until later this spring and then break out the Yankees hat and jersey and by then they couldn’t make me leave. I’ve never had something so great as this happen to me in my entire life. Everything just fell in line and quickly. If I wouldn’t have been able to come here, I would have probably ended up in a nursing home, and they just aren’t equipped to handle ALS. This gift that they got here required them to take some New York patients. That’s the only reason I’m here now is that family decided to fund this. Otherwise, I’d still be sitting on the waiting list. It’s like a dream to me.”
That dream for Robbins, 60, started quite some time ago when he was diagnosed with ALS and was living in an apartment in New York that wasn’t accommodating to a wheel chair. He was also heavily reliant on his daughters and felt he was taking away from their lives. All of that sparked he and his family to apply for a spot at the LFCFL, but the waiting list was daunting. While he qualified, the likelihood of him getting a spot was slim to none.
Then came along a donor from New York City who wanted to pledge $17.5 million to open another ALS home at LFCFL, with an immediate $5 million gift to fund the expansion. The commitment, said Chelsea Jewish Foundation President Barry Berman, came with a promise to raise the rest of the money over the coming years.
The expanded home will be known as the McDonald ALS Home.
Already, one home exists at LFCFL and was designed by resident and ALS patient Steve Saling. The cutting edge design leans heavily on technology to level the playing field for patients with the degenerative disease and allow them to have a high quality of life – including being able to operate the television, speak through a computer and even open the blinds with the flick of an eyelid.
Naturally, all of that comes at a price, and while the concept has been refined here in Chelsea, the price tag still remains prohibitive.
That’s why Berman was excited when the New York family first came forward.
At first, he said they wanted to fund a facility in some other location in a different part of the country, having been familiar with the work done at LFCFL in Chelsea. Berman lent a hand to help them find a place, but eventually the family changed its focus.
“They soon came to realize that what they wanted to fund is what we have here,” he said. “The other places they were looking at were going to be nursing homes with an ALS wing and not what we have here. They understood it’s extremely financially challenging to open up a new ALS house.”
In the end, they decided to give the gift to LFCFL in order to open up a new house here, replacing a short-term rehabilitation facility already within the building.
“They gave a $5 million upfront gift and through the years they are going to help me raise the additional funds,” said Berman. “One thing they wanted was that we take a couple of New York people because that’s where the money came from and where they’re from.”
When the news was announced, Saling took to Facebook and was able to fill the new house in a matter of days – showing the extreme need for such facilities.
“It filled up with Steve Saling just putting the news on his Facebook page,” said Berman. “The calls kept rolling in and in until four days later the house was filled up. Then we had to start putting people on the waiting list again, unfortunately.”
The gift allowed the home to open, and the $12.5 million will allow it to operate for 20 years.
Berman said the gift has opened his eyes to the new possibility of the LFCFL being an exclusive ALS residential facility – being on the cutting edge of such care worldwide.
“My goal now is eventually to open up three or four more homes and that this building would be a center for excellence in ALS care,” he said. “The people who made the gift may be interested in working more with us and it would be an honor to develop another home with them.”
For Robbins, the gift and his new place of residence has given him something he could never have paid for – dignity.
“The biggest thing for me is not being a burden on my daughters’ lives,” he said. “I’m in a nice place and I”m not a burden on them. They can get on with their lives and know I’m in a great situation here. To be able to use the bathroom and use the toilet with the door closed or take a shower with hot water is something I couldn’t do. I can do that now. Those things give you your dignity back. I’m just very, very fortunate and happy.”
Mike Robbins, 60, of New York City is one of the newest residents
of Chelsea’s Leonard Florence Center for Living’s new McDonald ALS House. A group of benefactors recently gifted $5 million to LFCFL and a promise to raise $12.5 million over 20 years, allowing a new ALS home to be constructed and opened this month.