Eleven-year-old Cathryn Achilles is at peace knowing she’ll
never read, write or even drink water again. She no longer takes
dance classes, performs gymnastics or plays hide and seek.
Cathryn understands she’d be fortunate to live beyond her
teens.
She has an extremely rare disease called Ataxia-telangiectasia,
which afflicts one in 40,000 births. While A-T children appear
normal as babies, their health immediately starts a gradual
decline.
Eleven-year-old Cathryn Achilles is at peace knowing she’ll never read, write or even drink water again.
She no longer takes dance classes, performs gymnastics or plays hide and seek. Cathryn understands she’d be fortunate to live beyond her teens.
She has an extremely rare disease called Ataxia-telangiectasia, which afflicts one in 40,000 births. While A-T children appear normal as babies, their health immediately starts a gradual decline.
“We understand the nature of what Cathryn has,” said her father Jim. “She deals with life-threatening circumstances regularly, even in a normal day.”
The “ataxia” part of the disease is a degeneration of the brain’s cerebellum, which leads to lessened muscle control and eventual confinement to a wheelchair, according to the A-T Children’s Project. Cathryn started using a walker in December 2000 and an electric wheelchair in July 2001.
The “telangiectasia” causes an appearance of tiny red veins in the corner of her eyes. Her eye muscles constantly tremble and have become increasingly difficult to control. Her speech is slow and often slurred.
Cathryn has an immune system deficiency, leaving her almost as vulnerable as an AIDS patient. She has a higher-than-normal likelihood of getting certain types of cancer, such as leukemia and lymphoma. At an early age, she had difficulty swallowing. Her growth lagged considerably. And Ataxia may eventually cause mild diabetes, among other problems.
At the age of 2, her parents noticed her declining health. The symptoms of A-T were apparent, yet befuddling to doctors at the time.
She was defenseless, as were Mom and Dad. As the symptoms of her apparent ailment became increasingly bizarre, with doctors perplexed, the family wondered – what’s wrong with Cathryn?
“She just kept walking really wobbly,” said her mother Deanna. “It kind of looked like she was drunk.”
Not only that, Cathryn failed to gain weight. And her size didn’t even classify in the lowest one percentile of children at her age. The Achilles family drove every other month to a Fresno geneticist who suspected a mitochondria disorder but continually failed to pinpoint the ailment.
For years, Jim and Deanna Achilles endured ceaseless uncertainty about the livelihood of their daughter.
“Endless.” That’s how Jim referred to routinely disappointing trips to the doctor.
“I was always afraid I’d go in there some morning, and she wouldn’t be alive,” Deanna said.
Jim is pastor at Grace Bible Church in Hollister, while Deanna home-schools Cathryn and 8-year-old Robby. Crystal, 15, attends San Benito High School.
The mystery was more complex yet. Her body’s natural insistence to grow was at battle with A-T’s intentions of halting development.
“It always looked like she was improving,” Deanna said. “Then every now and then she took a dip… And then, they (A-T children) degenerate faster than they grow. We hit that curve.”
A-T symptoms elevated significantly as she entered the third grade. She fell down more often. And her noticeable difficulties with learning intensified. Cathryn’s ability to read, write and speak toppled.
“It was a very dramatic notice of degeneration,” Jim said.
Finally, upon suggestion from the family doctor to visit Stanford, a geneticist diagnosed Cathryn with A-T in May 2000. Her reddened eyes tipped him off. And one simple blood test proved his suspicion.
“All the blood tests she had, they could have looked for it all along,” Jim said. “All they had to look for was a tumor marker that goes hand in hand with cancer and child birth. It’s called alpha feta proteins.”
Even facing an almost certain reality that Cathryn’s fragile body would eventually succumb to symptoms of A-T, the family embraced relief. They finally knew the cause of her complications. They could finally manage the disease.
“It was mostly relief because we had already worked past the understanding that this was going to be serious,” Jim said.
During eight years of puzzlement, Jim – strongly rooted by Christianity – said their search for clarity regarding Cathryn’s medical condition never shook the family’s foundation.
“It didn’t shake our faith. It didn’t shake us morally. It didn’t give us a big deal of fear,” Jim said. “We trusted God’s in control of this.”
A determined Cathryn
Cathryn maintained remarkable calmness through times of uncertainty, according to family members.
She involved herself in weekly church-related activities, and still does. Aside from church and Sunday School, she attends a class Wednesdays – where Dad is the teacher – and also Pioneer Club on Thursdays.
Although her weakened muscles disallow certain activities, her body doesn’t restrict her completely. As the family surrounded the TV Tuesday night and watched a video, she lunged from her wheelchair to the carpeted floor. Her face brightened with enthusiasm, which seemed natural for Cathryn.
A month ago, the Achilles family moved to another house in Hollister – this one much more spacious, more catered to Cathryn’s needs than their previous home on Powell Street. A group of Baptist churches donated money toward purchasing the home. Without that contribution, Jim said the family could not afford it.
They also own wheelchair ramps for the house entrance and wheelchair accessibility for the van.
“This house is designed for her,” Jim said.
The family feeds her while she sleeps through a “permanent abdominal feeding port,” or a G-tube. She can’t drink anything, ever, because there’s danger of inhalation into her lungs.
The G-tube hooks to her stomach. It resembles an I.V. bag, which they fill with a nutritional supplement and water. If Cathryn rolls while sleeping, an alarm rings, and Jim or Deanna wakes up to fix the line and reset the machine.
Feeding through the G-tube has particularly helped spurt growth, Jim said.
“Once that happened, she plumped out, she popped up, she’s growing, and she’s back on the chart doing really well,” Jim said.
For school, Cathryn doesn’t read or write because her eye muscles move around too much. Her parents either read to her, or she’ll listen to books on tape. She started receiving additional help last year from a special education teacher, Sharon Hensley, from the Almaden Valley Christian School. Deanna referred to Hensley as an “invaluable resource.”
Cathryn, admirably, has never sacrificed what no little girl should – childhood.
“I did wonder if my friends would like me or not,” Cathryn said. “They do like to play with me… a lot.”
She treasures her Beanie Babies, horseback riding, art and shopping. She plays with Robby on the computer. She watches movies. Among her favorites are “Chicken Run,” “Oliver and Company” and “The Princess Bride.”
Cathryn has somehow conserved her talent for arts and crafts. Even if one small cartoon figure takes an hour to complete, Deanna said she does it.
She proudly struts her impressive memory. Cathryn memorized more Bible verses at day camp than any other child and won an award in Pioneer Club, also for memorization of Bible verses.
Cathryn dreams.
Deanna said Cathryn always aspired to play the harp and idolizes Nants Foley, a local real estate agent who plays the instrument. Lark in the Morning, a music store in Mendocino, donated a harp to Cathryn two years ago. She often sits in the family room and strums away. But because of A-T, she’ll never actually learn to play.
Jim, Deanna, Crystal and Robby constantly strive at helping Cathryn on a daily basis. Sometimes it’s simple obstacles around the house – guidance on the computer, boarding her into the van, opening doors.
Crystal will baby-sit when Jim and Deanna are gone. She’ll feed her, bathe her, plug in her pump, anything her little sister needs.
“One thing that’s been special for us (parents) is to watch how Robby and Crystal both have really taken steps on their own to help care for Cathryn,” Jim said.
Two years ago, the Make-A-Wish Foundation – a nonprofit organization that grants wishes to children with life threatening illnesses – sponsored a shopping spree for Cathryn in Salinas. She chose new clothes for church and Sunday School.
According to the family, Cathryn doesn’t just say thanks in appreciation. She insists on constantly giving right back with gifts to family and friends.
“I like giving instead of getting,” Cathryn said.
She said her Dad acts most surprised when he receives something from her. Cathryn is particularly proud of a clay dog figurine, about the size of her fist, that she sculpted two years ago. With A-T’s progression, she no longer has the capability to make such a gift.
“She’s not kidding, she really does like to give,” Jim said. “That’s especially fun for us to watch as parents. At a time when most people would say she has a right to get, she really thinks constantly about what she wants to give. When we go shopping at a store, she’s constantly saying, ‘Well, this friend would like this, or this friend would like that.'”
Religion has always played a role in Cathryn’s approach toward life. As she expressed her convictions about God’s purpose, her mood turned suddenly earnest, her arm motions suddenly assertive.
“I understand that God controls my life,” she said. “If there is a God, and the Bible clearly says that there is a God and Jesus, you have to accept him in your heart to get to heaven. And in heaven, you live eternally.”
The family possesses an astonishing courage toward the disease. Jim and Deanna said they talked on Thanksgiving about even being thankful, in some ways, for A-T.
“Because of what it has demonstrated in love that other people have shown us,” Jim said. “What it’s proven about God’s faithfulness to us. What it’s been teaching our kids about sacrifice, love and what’s important.”
They do realize what A-T ultimately means for Cathryn, though.
“There’s a real brevity of life there,” Jim said. “And we understand that.”
As her Mom and Dad talked about God’s role in overcoming adversity, Cathryn lay across the couch wearing a bright purple sweater and sweats. Her head rested on Deanna’s lap. She stared with a delicate smile, her eyes glassy, her heart undoubtedly at peace.
