Forum Photo courtesy of The Mayer Family
Philly Mayer surrounded by his supporting cast: (L TO R)(back row) sister Ashley,mom Angela, (front row)brother Joe, Philly and brother Andy on Saturday night before the marathon run. Below: Phil Mayer shares a hug with Philly at their Howard beach home.
By Patricia Adams
SMA (spinal muscular atrophy) is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.
This past Sunday, two Howard Beach twin brothers, Andy and Joe Mayer ran the New York City Marathon on behalf of the Cure SMA Foundation, and along with others running for SMA, raised more than twenty-thousand dollars for the cause. But for Andy and Joe, it was not just a race, or a mechanism to raise funds, but a continuation of efforts they have been actively pursuing for the last 16 years, since their younger brother Phillip, or Philly as he is known, who was born with SMA in 2002.
“I don’t even really remember being surprised when we found out,” explains Andy Mayer, a 27-year-old Physician’s Assistant (PA), currently working as a fellow in a program at a children’s hospital in Rhode Island. Brother Joe, also works as a PA at the Hospital for Special Surgery in Manhattan. The twins were quick to agree that although they knew Philly and their family would face many challenges, they were never scared of what would come down the line. “He was our younger brother. He was still just Philly,” Joe added.
While the medical definition of SMA is complex and difficult for a layman to comprehend, expressing the complication of the disease in everyday terms paints a very stark and disturbing picture. SMA leaves people with the genetic mutation with great difficulty in breathing, unable to walk, or to bathe and feed themselves without assistance. The simplest tasks, like picking up a glass of water, remain beyond their capability.
Facing a field of daunting tasks, which to most would seem virtually impossible, the entire Mayer family embraced the road ahead of them with the lofty challenge of creating a normal life for Philly from the day he came home from the hospital. Looming over their heads and hearts was the prognosis of a very short life span, in fact, that Philly would not even reach his 5th birthday was the cold and hard reality presented by medical professionals.
But Philly’s fifth birthday came and went, and it became clear that he had no intentions of conforming to the expectations of his doctors. Equally as obvious was the commitment of the circle of family and friends that refused to yield to the grim forecasted predictions.
Challenges continued to mount. In addition to the enormity of physical obstacles, there were excessive financial burdens and emotional stressers that introduced themselves almost on a daily basis.
But still, there would be no yielding. Andy attributes much of the success in handling the barrage of insurance issues and bureaucratic red tape to his mother, Angela. Herself a PA, the matriarch of the Mayer clan was relentless in her efforts to secure every conceivable service to provide a rich and full life for her youngest son.
“My mom is the strongest person I’ve ever known. She’s up at the crack of dawn everyday, off to the gym for a workout and then home to get Philly showered and ready for school before she gets ready and goes to work. She’s been doing that everyday for years,” Andy told The Forum. “She’s really the force that keeps our family moving.”
And that force had her own champion and partner. Constantly at her side, and making sure that Philly experienced everything he expressed a desire to, from camping, fishing, sports, video gaming and whatever else that arose– was husband Phil Mayer. His tireless efforts secured for his youngest son the exposure to the things most kids with SMA would never dream of doing.
Then suddenly, in January of 2014 Phil passed away at age 53, leaving a seemingly unfixable void in a family who had already been dealt a tragic hand. But the father who took on the world for his family, left behind provisions to continue. His insurance and benefits would allow them to keep providing for Philly’s needs and the indelible mark of his spirit continues every day to fuel their original plan.
Angela Mayer beams when she speaks of her children’s stepping even closer to the plate since the loss of their father. “My kids didn’t skip a beat. They have picked up a lot in terms of taking care of the things Phillip and his dad did together. They make sure that he continues to do everything he wants and loves to do. The boys’ handle camping and fishing and things like that. My daughter Ashley goes to the ends of the earth to make special days for Phillip like fancy steak house dinners on his birthday and tickets to Hamilton. It never ends. My kids are God’s gift to me. All of them.”
When asked where all of her strength comes from, Angela Mayer is quick and definite in her response. “God has put me where He wants me to be and He has given me the strength and the courage I need. I feel peace because He is in front of me. He made this plan for me and from Him all good things come. He is love. Without Him, we are nothing.”
Philly currently attends school in Albertson Long Island at the Henry Viscardi School, a specialized private learning institution whose accessible educational setting provides a fully-enriched academic program, a variety of therapies, assisted technology and medical supports to students who may otherwise need to receive instruction in their homes or a hospital. At 16, he is a senior, having skipped a full grade.
He is exploring his options for college, including Stony Brook and several others that offer degree programs in Engineering.
He plans to live away from home with the assistance of a full time nurse or aide and also plans on getting his own place after securing a job when he finishes school.
Two years ago, Philly began receiving an experimental treatment approved by the FDA that is the first medical therapy option ever for SMA. Spinraza was introduced in infants born with SMA and the results of the drug were so overwhelming they extended availability to older patients.
Since beginning the therapy, Philly has gone from being unable to lift a weight of a few ounces to now being able to raise a two pound dumbbell and drink a large glass of water on his own. His upper body strength continues to increase and hopes for the future are tremendous, the results of the therapy nothing less than miraculous.
Listening to any of the Mayer’s tell their life story, one centered largely around Phill, there are a lot of things missing. Complaints. Bitterness. Anger. Frustration. Selfishness.
Perhaps his brother Andy put it best. “Phillip has always been treated like a normal kid. We’ve always been able to modify things so he could be included. He is strong. He makes plans and sees them through. He is aware of the challenges to overcome and is so strong in his faith and trust in God. Wherever he goes and whatever he does, he will bring glory to God.”
Please see related editorial on Page 6.