Mason Fluty gurgled as his wide, blue eyes focused intently on a swirl of brightly colored images racing across the television screen at his home in Galt.
At six months old, Fluty’s attention is grabbed by almost anything that moves. The world is new to him, and yet for someone so young, he has already endured so much.
Fluty has already battled through one major surgery and will have to endure many more in the coming weeks and throughout his life to correct the various physical issues that result from Apert syndrome, a rare chromosomal disorder that Fluty was diagnosed with at birth.
Apert syndrome is a genetic disorder in which the 10th chromosome somehow mutates during conception.
The condition is characterized by the premature fusion of certain skull bones — called craniosynostosis — which prevents the skull from growing normally and affects the shape of the head and face. It can also affect a varied number of fingers and toes, causing them to fuse together — called syndactyly
In Fluty’s case, his hands and feet are webbed, even though he has the bones to have 10 separate toes and 10 separate fingers, and he did not have the “soft spot” babies are supposed to have at birth, meaning his skull had already fully fused.
To help ensure that her son grows up happy and healthy, Casey Freitas and her husband, Michael Fluty, along with family and friends, are working to try to raise funds to help them afford hospital bills and travel expenses to give Fluty a chance at a relatively normal life.
In the next three months alone, Fluty will go through two major surgeries. On March 7, surgeons at UC San Francisco will slice across the top of Fluty’s head and down around his cheeks to continue to correct his craniofacial area.
On April 5, Fluty and his parents will fly to Texas where a doctor who specializes in Apert syndrome will give Fluty his 20 best tools — his 10 fingers and 10 toes.
Dr. Jeffrey Fearon, who specializes in Apert syndrome, has agreed to perform the three reconstructive surgeries at no charge, and the hospital and staff reduced their fees by 85 percent.
The family’s portion for each of the surgeries is $25,000, plus travel expenses and living arrangements while in Texas. In total, Freitas said she and her husband are hoping to raise $75,000.
Initially, Freitas petitioned twice to have the state assist with her baby’s medical expenses.
But the insurance caseworker assigned to assist with Fluty’s care did not have any experience with his condition, Freitas said, so the caseworker “Googled” it.
Upon reading worst-case scenarios, the case worker called Freitas and indicated that she was not sure why Freitas would be upset with Mason only having three fingers on each hand.
And for a mother who already has two healthy boys and whose pregnancy with Fluty had few complications, Freitas said she is learning not only to take setbacks in stride, but also that there is hope for her son’s future.
Though Mason Fluty was unable to get help from the state, Freitas said great support has come in spades from Galt residents, who have been pouring in donations of whatever amount they can muster after learning of Fluty’s much needed surgeries either through word of mouth, flyers or a Facebook page created by Freitas.
“When my doctor told me that something was wrong with my baby during labor, I told him that was a cruel joke,” Freitas said about Fluty’s birth. “It was so tough, I had no idea what to do or how to handle it ... But the support has been so great, I don’t know how to deal with it often. It is surprising and refreshing.”
Since fundraising for Fluty began in January, Freitas said thousands of dollars have come in. The Squeeze Inn in Galt helped raise nearly $850 for Fluty’s April surgery, and as of Jan. 15, a Facebook message on Fluty’s fan page stated that over $3,500 had been recorded in money raised.
“My daughter is a strong individual, as you probably noticed,” said Kevin Freitas, Mason Fluty’s grandfather. “(In addition to fundraising), a lot of prayer has helped. God has a plan, and doors are starting to open.”
And until his surgeries in March and April, Fluty will continue to grow and gurgle the way he does every day. Freitas said she is thankful that Fluty not only continues to show positive signs of cognitive development, but that above all, he seems to be very happy.
“My friends and I decided the other day that being normal is a relative thing,” she said. “Mason may not be the typical baby, but he sure is special. And I love him very much.”
Contact reporter Katie Nelson at firstname.lastname@example.org.