The Holters Christmas tree went up the day after Thanksgiving. Babys first Christmas is special, and theres an understandable desire to make the season last.
Nearby, 4-month-old Wyatt, bright-eyed and focused, reclines and watches Guy Smiley and the Sesame Street crew on the wide screen. His parents are there. A family friend. A nurse.
Wyatt is feeding, but theres no bottle in sight. Instead, a tube snakes its way from an electronic device, under his shirt and directly into his stomach, the walls of which are slowly deteriorating.
Baby Wyatts first Christmas might be his last.
Born Aug. 6, Wyatt appeared healthy for the first month of his life.
He wasnt thriving, however. His mother, Katie Holter, first suspected a problem when Wyatt was not fighting and kicking his legs during diaper changes. The infant was extremely lethargic. Katie and her husband of about 18 months, Josh, began Internet research. The more they learned, the more concerned they became.
Testing at The Childrens Hospital at The Medical Center of Central Georgia in Macon led to a shocking diagnosis: spinal muscular atrophy, which causes muscle damage and weakness. Wyatt was not merely slow to develop muscles, he was losing what he had.
Theres no cure. No treatment, Katie said evenly.
Most SMA children die before theyre 2, Josh added.
Theres always hope, however. The Holters continue to fight for Wyatt and for a cure.
Only God knows how long Wyatt has, Katie said. I want that cure before its too late. But even if that doesnt happen, (a cure) will help other kids down the road.
Josh is an airborne mission systems specialist for the Joint Surveillance and Target Attack Radar System at Robins Air Force Base, and his medical insurance covers most of the cost of Wyatts care. But Katie hasnt returned to her administrative and bookkeeping job at Nichols, Cauley and Associates in Warner Robins. Her inability to do so puts a strain on the household budget.
Katies co-workers brainstormed a way to help. In November, they began organizing a 5K race to benefit the family and research for a cure.
It was a lot of work in a little bit of time, said Michelle Lacey, a CPA at the firm.
The group established a website for registration, a Facebook page and a PayPal account for additional donations. Wyatts Wish 5K and Fun Run is scheduled for Jan. 5 and will begin at 8 a.m. at the Landing Pointe shopping center at Ga. 247 and Sandy Run Road.
Beyond helping the Holters and funding SMA research, the group hopes to raise awareness of the disease and the relatively high number of people who carry the mutant gene.
In the meantime, the Holters plan to enjoy the holiday season to the fullest. Its important for them, and its important for Wyatt.
Contact Chris Deighan at firstname.lastname@example.org.