Being different is not easy. Davien McCarty knows this first hand. The 17-year-old from Eugene has Asperger’s syndrome (AS), an autism spectrum disorder that takes the form of significant difficulties in social interaction as well as restricted, repetitive patterns in one’s actions and focus.
McCarty was diagnosed with Asperger’s about 6 years ago. But the boy’s mother, Winter, says he has always struggled. For a long time he was in and out of mental health professionals’ offices. The first diagnosis, in fact, was that he was bipolar. But one day Winter, who is a mental health professional herself, was approached by an Asperger’s specialist. Had McCarty seen someone who focuses on Asperger’s, the specialist asked. Once the official and accurate diagnosis came in, it made sense. Winter says,
“He’d appear different from other kids in that he wasn’t reading social cues and structures or understanding boundaries. He’d go up to homeless people and want to help them — so he would give them our home address and say, ‘Come to our home, we’ll help you and give you food!'”
Asperger’s syndrome was named after Hans Asperger, an Austrian pediatrician. In 1944, Asperger studied children with a certain set of attritubes: lacking in normative nonverbal communication skills, demonstrating limited empathy towards peers, and being clumsy physically. The U.S. National Library of Medicine says,
“Asperger syndrome is often considered a high functioning form of autism…Asperger syndrome is a pervasive developmental disorder (PDD) or autism spectrum disorder (ASD). The main difference between Asperger syndrome and autistic disorder is that children with Asperger syndrome do not have speech or cognitive delays.”
While having Asperger’s means McCarty is different from other kids, some things are the same. Like most kids, McCarty enjoys playing video games. His mom says,
“He plays a lot of video games because that appeals to his issues. He likes building forts and playing toys. His hobbies are games, especially zombie games.”
Like other kids, too, McCarty wants to have friends. But having Asperger’s has made that difficult. He only has one, his mom says, and that one friend also has Asperger’s.
Facing new challenges
Unfortunately, this family’s difficulties have not ended with their son’s Asperger’s syndrome. On April 1, 2012, McCarty came to his mom and showed her that he had lumps on his head. Winter says,
“They weren’t huge lumps. I thought maybe they were ingrown hair follicles. Then it got worse. Then his mouth started hurting and he was saying his chin was numb.”
So Winter took her son to the dentist. Dr. Shannon English at Willamette Dental Group in Eugene took x-rays of McCarty’s mouth. She told them that his dental records were fine. But she also encouraged them to take the boy to the doctor.
Because of English’s advice, Winter says, she took her son to Dr. John Dunphy at RiverBend. Dunphy said he did not know what the lumps and mouth pain were. Neither did two other doctors who looked at McCarty. And all this time, McCarty’s mouth kept getting worse.
Finally, the doctors at RiverBend decided to do a biopsy on McCarty’s head. And on May 1, 2012, Winter heard the results from Dr. Dunphy: McCarty has Burkitt’s Lymphoma.
Taking the fight to Portland
Burkitt’s Lymphoma is an uncommon type of Non-Hodgkin Lymphoma that commonly affects children. It is a highly aggressive cancer of the lymphatic system and often involves body parts other than lymph nodes. When Winter finally got the diagnosis, it came just in time: her son’s eyes had started swelling from the cancer. She says,
“He got really scared and terrified because he couldn’t see well.”
Dr. Dunphy at RiverBend advised Winter to take McCarty to the Doernbecher Children’s Hospital in Portland. The children’s hospital, part of the Oregon Health and Science University (OHSU), is state-of-the-art. Especially due to McCarty’s Asperger’s, it would be uniquely suited to treating him at whatever level he needed. His mom says,
“He wouldn’t respond well to being treated at a hospital as an adult.”
So Davien McCarty began chemotherapy treatment at Doernbecher, under the medical expertise of Dr. Suman Malempati. The treatments are still going to this day. Winter takes McCarty up to Doernbecher every four weeks for a new round of chemo—and that is as of last week. Before last week, she took him up to Portland every three weeks—and they live in Eugene.
Their hospital visits do not stop with chemo, either. McCarty’s body reacts to the chemo with fevers. Winter says,
“After treatment, every single time we go up, there is suposed to be a break between hospital visits. But within three to five days he gets a fever so he’s been hospitalized at RiverBend [in Eugene] every single time after treatment.”
Chemo treatments for McCarty at first lasted 5 to 6 days at a time. Now they are down to 3 days. He still has about 3 more visits to Doernbecher assuming that everything goes according to plan. If not, Winter says,
“It will get super difficult.”
The cost of love
“Super difficult” is hard to fathom when you consider how difficult the process has already been. While McCarty has responded positively to the chemo, Winter says, this journey has taken a huge toll on the family, both emotionally and financially.
Winter and McCarty’s step-father fortunately have health insurance. Without insurance, Winter says, the chemo treatments would cost about $10,000 to $15,000 a month. But even with insurance, the process has put the family in the red.
“Our house went into foreclosure right before we got the diagnosis. And we were evicted the month he was diagnosed. I have my own medical issues. We only have one car, and I have to use it for a week at a time driving up to Portland while my husband stays in Eugene and takes the bus. We had to buy an air conditioner because of [McCarty’s] blood cell count. When you’re up [in Portland] for five days at a time, the hotel is expensive. Not to mention the gas and the food. It’s taken all our money.”
That is when Rose Kempton, Winter’s mother and McCarty’s grandmother, stepped in. Kempton saw her daughter’s family struggling and decided to help by creating a fundraising drive on GiveForward. GiveForward is a fundraising website that has helped raise over $20 million for medical and other causes. Kempton says,
“The cost of special prescriptions are robbing them blind, as is the cost of car gas, hotel parking, and food.”
Kempton’s web fundraising inspired her daughter to do the same. So Winter has organized her own fundraiser for her son on IndieGoGo. Winter has set $10,000 as her goal for fundraising, saying,
“That would cover everything we’ve been down on. That would bring us up from the red.”
So far Kempton and Winter have raised about $600 — a mere fraction of what they need. But they are not giving up. Winter recently distributed flyers all around Autzen Stadium before last weekend’s Oregon vs. Arkansas State game. She hopes to spread the word around the community.
But most importantly for Winter, she has seen a new strength in her son—a strength that inspires. Winter says,
“To be honest, if anybody ever told me a year ago that my son would have to go through all this, from the bone marrow biopsy to the tests, I would have said — no, he would never make it. This is a boy who used to cry when anything happened. People with Asperger’s are super-sensitive. But he has been able to handle more than I could imagine. He has been so strong. The strength he has demonstrated shows he is my son. He has impressed me beyond anything I could have imagined. [People who knew him when he was younger] wouldn’t even recognize the strong boy that he has developed into because of this.”
For more information about Davien McCarty or to help out his family, visit his mother Winter’s fundraising website at http://www.indiegogo.com/helpdavien?c=home or his grandmother Rose Kepmton’s fundraising website at http://www.giveforward.com/davien.