By Bob Dickson
For more than a decade, Garrick Moss has been shaping the lives of young men as a head football and baseball coach at Santa Clarita Christian High school in Canyon Country. Moss has guided both programs to CIF championships (baseball in 2004, football in ‘08 and ‘09).
In 2010, however, Moss and his wife, Kendra, found themselves facing an opponent for which the coach had no game plan. Their four-month old baby boy, Blake (born Nov. 21, 2010), was diagnosed with Type 1 diabetes. His was the youngest diagnosis in the history of UCLA Medical Center.
The diagnosis was a blow, but the Moss family would have to absorb many more. Their trial was only beginning.
While Blake was in the hospital, doctors began noticing signs that pointed to something more severe. First, they noticed what appeared to be hiccups with no noise; nurse believed it might only be reflux. An EKG revealed that Blake was experiencing infantile spasm – a form of epilepsy.
There were other signs: Blake’s low birth weight of five pounds, 11 ounces. His inability to add any weight to his frame during his first month of life. His lack of energy. Physical weakness so severe he couldn’t lift his head.
An endocrinologist mentioned DEND syndrome – an extremely rare genetic disorder that linked diabetes and epilepsy. But the odds were impossibly slim; there had only been six documented cases worldwide.
Blake was the seventh.
The eight weeks between when Blake was tested until the Moss family received the diagnosis were horrific. For two weeks, Garrick and Kendra controlled Blake’s sugar levels with insulin. However, the seizures worsened. One night, they got so bad that Blake began to choke. For several terrifying minutes, Garrick hovered over Blake’s body, administering rescue breaths while Kendra called 911. Blake was flown by emergency helicopter to UCLA, where x-rays revealed that he was suffering with aspiration pneumonia, which doctors treated with a round of steroids.
Blake’s stay in the hospital lasted three days, and when he went home, it was under a cloud of caution. The steroids that halted Blake’s spasms tends to raise blood sugar levels, so doctors were unwilling to continue the treatment until they could first get Blake’s diabetes under control. So the spasms continued.
Blake managed to stay out of the hospital for three weeks before a second aspiration put him back in, this time for seven days. Desperate to control the spasms, doctors bumped up his steroid treatment with Adrenocorticotropic hormone (ACTH) – a stronger steroid involving a series of intramuscular shots over several weeks. The cost of the steroid is $25,000 a bottle, and Blake needed six bottles.
The ACTH stopped the spasms, but the trial was far from over. Blake began to experience episodes of the chills, which necessitated a round of antibiotics. Days later, doctors noticed that Blake’s blood oxygen levels were falling dangerously low while he slept. A healthy baby’s oxygen saturation levels shouldn’t dip below 94, but Blake’s fell into the mid-60s.
By now Blake had been admitted into the hospital five times, but his sixth stay would be the longest. It was the result of rare side affect to one of his spasm medications that caused swelling in his brain stem. He was rushed from the emergency room to the PICU, where he stayed for 39 excruciating days. He didn’t open his eyes for a week.
It has been 18 months since Blake’s last hospital stay for more than anything but the flu. His development, slowed by DEND syndrome, has been steady. He experiences tightness in his joints, along with the muscle weakness that is characteristic of his disorder. He continues to improve, though he must rely on some special equipment to assist with his physical therapy.
Garrick and Kendra understand the road they are traveling. They can see clearly the obstacles they face. The therapy will be long. The medical expenses will be stratospheric.
But they are a family of faith. They know that the God who has carried them this far will not let them go. They trust Him for the life of their son, just as they trust Him for the rest of their lives. They trust Him to meet their needs.
A part of that provision continues to come through the efforts of their church and their friends. On Friday, May 18, the community is invited to join the Moss family at the Chick-fil-A at Valencia Town Center for a special benefit fundraiser from 6-9 p.m. Attendees will be able to enjoy live music, carnival games, a raffle and more – with a percentage of the proceeds to go to help cover the medical costs of Blake’s treatment.
For more information, look up “Moss Family Fundraiser” on Facebook.com. To date, close to 150 people have committed to attend.
There’s plenty of room for more.