Betsy Hilderbrand Clark’s family is breaking from tradition this holiday season, and they’re doing so with a heavy heart.
In all likelihood, it will be the last Christmas they celebrate with one of the youngest members of the family, Betsy’s 3-year-old son, Caden Frost Hilderbrand.
Normally, the family does a lot of traveling around the holidays. Not this year.
“Everybody who wants to come see us can. We have to keep him as comfortable as possible,” Betsy said as Caden lay motionless on the couch, his silence interrupted only by an infrequent gasp indicating a buildup of saliva in his mouth.
Caden has Tay Sachs disease, a fatal storage disorder in which a fatty substance builds up in tissues and nerve cells of the brain. It develops from a single gene mutation, and both parents must carry the defective gene for a child to contract the disease. According to the National Institute of Neurological Disorders and Stroke, as the nerve cells become distended with fatty material, a “relentless” deterioration of mental and physical abilities occurs. Life expectancy is four years. Caden will turn 4 years old in February.
In October, Caden was placed on hospice, and Betsy reluctantly signed a do-not-resuscitate order.
“Any lifesaving measure now …,” said Betsy, her voice softening as she tried to hold back the tears. “We know what the result will be. There’s no treatment. There is no cure. His body is forgetting how to breathe because the brain stem is covered with masses. We’re treating the symptoms and keeping him comfortable.”
A single mother of five, Betsy was planning to take Caden and three of his siblings, 16-year-old Caitlin and 9-year-old twins Carson and Coby, to see the Christmas lights at Oglebay Park in West Virginia. But that’s about all the holiday cheer the family will experience outside their Washington home.
“Christmas is one of his favorite holidays. He likes the brightness,” said Betsy, who also has a 19-year-old son, Conrad.
That’s why, when someone asks what they can buy Caden for Christmas, she suggests an ornament.
“After he passes, we’re going to decorate a tree with them. It will remind us of him,” Betsy said.
Betsy knew from the moment Caden was born something was wrong.
He was a fat baby, she said. His body was limp. He could not sit unassisted. He gagged when he ate, and he never cried.
Doctors told her not to worry. Caden would “get more movement as he loses weight,” Betsy remembers them telling her.
Finally, when Caden was 11 months old, Betsy demanded answers. She told Caden’s doctor, “I’m not leaving this office until you do something.”
Early intervention specialists became part of Caden’s health-care team, but they couldn’t provide Betsy with any answers, either.
Two months later, Caden suffered his first grand mal seizure. It lasted for 10 minutes, and he was flown to Children’s Hospital in Pittsburgh.
It was there that a doctor told her he had witnessed epileptic seizures in four other children with symptoms similar to Caden’s, and all four eventually were diagnosed with Tay Sachs disease.
After immersing herself in Tay Sachs research, Betsy sadly realized Caden had many of the symptoms. One that was particularly troubling involved his vision. “When you look into your child’s eyes, you know when something is wrong,” Betsy said. “He could track things, but he always seemed to stare off.”
When the doctor at Children’s Hospital discovered cherry-red spots in Caden’s eyes, a telltale indication of Tay Sachs, Betsy knew the prognosis would not be good.
“They didn’t come out and say he’s going to die; they told me he was not ever going to get any better,” Betsy said.
Two weeks later, an eye specialist confirmed her fears.
After Caden was diagnosed, Betsy’s parents, Gregory and Pamela Hilderbrand, suggested she and the children move in with them. Betsy quit her job with Apria Healthcare in Bridgeville and did just that.
“I just wanted to be with him,” she said.
Caden has never been able to talk, although during one type of seizure Betsy said he’ll say, “I love you,” after hearing his mother repeatedly say, “I love you. I love you. I love you” as she helplessly tries to stabilize him. Caden eats through a feeding tube because he is unable to swallow, but Betsy occasionally rubs lollipops across his tongue to provide some flavor.
Despite the grim prognosis, Caden continues to work with a multisensory therapist three times a week. During one of those recent sessions, he “made” two pieces of artwork his mother will forever treasure. The therapist dipped Caden’s feet and fingers into paint and used them to create butterfly wings, caterpillars and flower petals. He also enjoys it when his mom reads to him, especially sensory books designed for touch, and listening to his three favorite children’s characters: SpongeBob SquarePants, Barney and Nemo.
“We could sit and listen to Barney all day,” Betsy said.
Since the Make-A-Wish Foundation usually doesn’t grant wishes until a child is 3 years old, Betsy packed up her five children and took a four-day trip to Disney World before Caden turned 2. It was no fun. The weather was lousy, and they lost power in their hotel.
Six months later, Make-A-Wish made an exception and granted Caden’s wish to visit Give Kids the World at Disney. The older kids balked, since their first trip was so bad.
But there was no complaining once they arrived.
“No words can describe what they had done for us,” said Betsy, recalling the Christmas celebration held there every Thursday evening.
At the time, Caden was using a specially designed wheelchair loaded with straps to help support him. Betsy told Santa Claus he didn’t have to hold Caden; it would be too time-consuming to unstrap him.
“Santa said, ‘I make it a point to hold every child,’” Betsy said. “We got him out of the chair, and Santa sang ‘Jingle Bells’ to him.”
It’s the only photo she has of her son with Santa. Caden’s not smiling, but that’s OK.
“This disease has stolen his smile,” she said.
Last year, the family donated money to help find a cure for Tay Sachs. In February, Betsy is hoping to hold a fundraiser in honor of Caden’s birthday. This time, the money will be deposited in an account Betsy opened at Huntington Bank called Caden’s Crusade. It will help pay for Caden’s funeral expenses.
“My big outings are grocery shopping and, now, Christmas shopping. I don’t go out for just me,” said Betsy, who sleeps in the hospital bed with Caden, rolling him and suctioning his mouth throughout the night. She doesn’t sleep much, but Caden, she said, “sleeps like a baby.”
To donate to Caden’s Crusade, make checks payable to Caden’s Crusade Fund and mail to: Huntington Bank, 590 Washington Road, Washington, PA 15301.