Celebrating a second birthday: Family walks, fundraises for son with spinal muscular atrophy
By Anna Skinner
Graham Vollmer wasn’t supposed to reach his second birthday. But month, the Westfield toddler will do just that.
At 8 weeks old, Graham was diagnosed with spinal muscular atrophy, a genetic disorder that affects the spinal motor neurons and harms the nerves’ ability to signal muscles to work, causing muscles to slowly deteriorate. Graham has type one of the disease, the fastest-progressing of the four types.
His mother, Adrienne, was shocked by the diagnosis. Graham is her third child.
“He was my most active baby when I was pregnant with him, and within a few days after him being born he stopped being able to nurse and not move his legs at all, and he couldn’t hold up his head at all,” she said. “When he was 6 weeks old, he had scary breathing episodes and he was gasping for air. We took him to specialists, and at 8 weeks old he was diagnosed.”
There is no cure for SMA. Adrienne credits a clinical trial drug, Spinraza, for helping Graham reach his second birthday. Spinraza was approved by the FDA in December.
To celebrate Graham’s birthday, Adrienne and the Vollmer family are planning a fundraiser walk called “Walk-n-Roll for Graham,” to take place May 12 at Coxhall Gardens in Carmel. The event begins at 5 p.m. with opening ceremonies and one-mile walk beginning at 6 p.m. A silent auction, games and music, an appearance by the Carmel Fire Dept. and ballpark food will be available until the event ends at 9 p.m.
“All of the proceeds are going to an organization called Cure SMA,” Adrienne said. “They fund critical research for new treatment drugs coming to the market. The organization donates a lot of resources to help newly diagnosed families find their way and navigate life with SMA and find a new normal and figure out what it’s going to take to create a new life with all these machines that help keep their child alive.”
A NEW NORMAL
The Vollmer family was quickly introduced to a new way of life when Graham was diagnosed. Natalie Finchum, a registered nurse, spends 40 hours a week at the family’s Westfield home caring for Graham.
Finchum said continuous care is important.
“Especially for little guys like Graham to have one person continually there to take care of him instead of like five different nurses a week for him because things change so quickly,” she said. “Like new meds, or for example his heart rate and his oxygen. You have to know his baseline and just little changes in his breathing, and those things are just so important to know.”
Graham relies on multiple machines, from a gastrostomy tube to a ventilator to multiple braces and more, to keep him alive and safe.
“It takes about an hour every morning to get Graham ready, to get him up and do respiratory treatments and all the things he needs in the morning, like making his food mix for the day,” Adrienne said. “Days are filled with lots of therapies, physical therapies and occupational therapies and when not, we are doing what we can with all of his different pieces of equipment to really help him explore and learn like any other toddler needs to. He just needs a lot of help with that.
“SMA doesn’t at all impact the mind. He’s 100 percent there. Children with SMA tend to be really smart because they rely so much on sensory things. We really try to stimulate his mind as much as possible throughout the day.”
Graham lives with Adrienne, his father Nick, and his two older siblings, Ben, 7, and Lucy, 5.
For more, visit Graham’s Facebook page called Prayers for Graham or events.curesma.org/site/PageServer?pagename=Graham_WNR_Home.
Attend Walk-n-Roll for Graham
What: A fundraiser for Cure SMA (Spinal Muscular Atrophy)
When: 5 to 9 p.m. May 12
Where: Coxhall Gardens, Carmel.
Price: $30 per adult, $15 per child
Activities offered: NinjaZone games, Carmel Fire Dept. appearance, food and music, silent auction items and more.
Where to sign up: events.curesma.org/site/PageServer?pagename=Graham_WNR_Home