Friday is a day most people look forward to because it signals the end of the school or work week. But for Fitchburg’s Kendall Oberg, 9, all that day brings is anxiety over a weekly routine of shots.
Kendall, who is this year’s Walk for Wishes front runner, is battling a rare, life-threatening autoimmune disease. Takayasu’s arteritis is a type of vasculitis that causes inflammation, narrowing and weakening of the large blood vessels.
Since she was diagnosed in 2011, much of her childhood has been consumed with doctor appointments, procedures and surgeries, including five angioplasties. Kendall typically goes to the doctor once a week for injections and every six weeks for IV treatment. She also takes three different blood pressure medications every day.
Although she dreads them, the needles are necessary to help keep her from having flare ups that can damage her arteries.
“That’s kind of going to be her life,” said her mother Lori. “She just wants to be a normal kid. Her favorite thing is to just go outside and run around with her friends and have playdates. I think the part that’s frustrating for her is ... she will still try to do things she probably shouldn’t because it hurts her.”
Lori explained that her daughter has a difficult time keeping up with other children because she gets fatigued easily and the lack of blood flow causes a stinging pain in her legs when she runs. Also, sometimes she is too sick to go even make it to classes at Cesar Chavez Elementary School, where she is in the fourth grade.
In a word, Kendall said it makes her feel “sad.”
“She’ll say, ‘I don’t know why this has to happen to me, why do I have to have it?’ And I don’t really have an answer for that, and that’s hard,” said Lori, who explained there is no known cause or cure for the disease.
To put a smile back on Kendall’s face and give the whole family a much-needed break, Make-A-Wish Wisconsin picked the Obergs up in a stretch limousine and sent them to Atlantis Resort in the Bahamas for a week last summer.
“We went swimming with dolphins and played with sea lions,” said Kendall. Her favorite memory was watching a sea lion go up to her dad, Rick, and kiss him with its tickly whiskers.
“It was nice to not have to think about anything. No doctor appointments, no running around. It was just really nice to see her laughing and happy and relaxed,” said Lori. “For kids that’s such an amazing thing, because they do get depressed and have to deal with so much more than most kids ever have to think about, unfortunately.”
Kendall has been sharing her story and is looking forward to being “the star” of Walk for Wishes along with other Wish kids at McKee Farms Park this weekend. The fundraising event helps grant the wishes of other kids going through tough medical situations.
This year, in honor of Make-A-Wish Wisconsin’s 30th birthday celebration, there will be free admission to everyone who pre-registers for the 5K run and walks. People are encouraged to set up a fundraising goal, make a donation, raise pledges, share their story and invite others to get involved, according to an event brochure. They can even join particular teams, including Kendall’s Dream Team.
“Make-A-Wish is pretty awesome. I’ve seen wishes that a lot of other kids have wished for – some crazy stuff – and they just go all out. Any way that they can possibly pamper the kid they just do it,” said Lori. She said Kendall was originally deciding between meeting Disney Channel actors or going to a big cat sanctuary.
“My real wish would be to not have to go to school and never have homework,” joked Kendall. “My mom wouldn’t let me do that.”
Lori said the application process for Make-A-Wish was fairly straightforward.
“You need a referral from a doctor to specify that (the child) does have a life-threatening illness, and then once they get verification from the doctor it’s a go,” she said. “Then they contact you and send wish granters to your house … and ask questions to get an idea of what (the child) would like to do.”
There are more than 270 Wisconsin children in the process of having their wish granted, according to Make-A-Wish Wisconsin. Walk for Wishes will directly benefit Madison-area children.
“They make dreams come true,” said Kendall.
While there are many types of vasculitis that cause inflammation in the body, Takayasu’s arteritis is very rare, with only two or three people in a million diagnosed each year.
Kendall had many appointments with her pediatrician before she was actually diagnosed. She had symptoms like stomach pain, fatigue and dizziness, and doctors told her she needed to eat more fiber or just had a virus.
“No matter what I would say, it was always explained away by everyday ‘normal’ kid things,” Lori said. “But intuition just kept telling me, something isn’t right, this shouldn’t be normal.”
It wasn’t until Kendall and her older siblings, Piper and Ostara, all got sick that Lori took Kendall directly to the ER. Whereas her sisters were getting better, Kendall’s fevers kept spiking and she was complaining of pain.
“That was the decision that probably saved her life, because the first thing they do in ER is your stats,” said Lori.
That included checking blood pressure.
“They never once took her blood pressure at the doctor’s office she was at,” said Lori. “If they would’ve checked during that year and a half when I kept bringing her back, they would have known that something was really, really wrong.”
Lori understands that it is very uncommon for children to have high blood pressure, but she urges parents to trust their instincts and simply ask the doctor to check.
“Just ask – it literally only takes a minute or two to take somebody’s blood pressure,” said Lori. “You never know – yes, what she has is really rare, but obviously she’s not the only one.”
Once they found out how high her blood pressure was, Kendall was admitted to Meriter Hospital overnight and then transported to the American Family Children’s Hospital.
“At that point I knew … that I was right that something was wrong with her,” said Lori.
Kendall stayed in the ICU for a month while doctors tried to figure out what was going on in her body. It took doctors two weeks to determine she had renal stenosis, but that was only a symptom of the disease.
“She was diagnosed (with Takayasu’s arteritis) at 6, but by (that time) she was in pretty bad shape,” said Lori. “Her body had actually set up a secondary system to kind of compensate (and make a detour) for the blockages.”
Since Kendall has spent so much time in and out of hospitals, she has learned to keep herself busy with arts and crafts.
“She loves to draw. When she was in the hospital for a whole month she would just sit in bed all day and create her little masterpieces,” said Lori.
To pass the time, Kendall also worked on completing puzzles. The irony is, her disease is just that: puzzling.
Shortly after diagnosis, Lori took Kendall to Mayo Clinic for a second opinion.
“They said, ‘Honestly, it’s a very complicated disease and it’s going to be a battle, a balance of meds and surgeries, and that’s all we can do at this point until there’s more research into the disease and they can figure out something better.’ So it’s just frustrating knowing that that’s the life she’s going to have to deal with,” said Lori.
Lori wants to bring awareness to the disease, because the reality is, many people don’t find out they have vasculitis until it’s too late.
“A lot of people pass away because they don’t know they have it. Sometimes they don’t find out until after the autopsy what caused their death, because on the outside they look completely normal,” said Lori.
Lori has set up a Facebook page with updates about Kendall’s journey with the disease. Someone from Madison messaged Lori through social media saying that she, too, has Takayasu’s arteritis.
“It was very nice to make that connection to find somebody else in your town that actually has it. We actually got to meet her about a week or two ago,” said Lori.
The woman gave Kendall a stuffed porcupine she can take to the doctor since it has needles that won’t hurt her.
While Kendall’s real wish is to not have the diagnosis, she would be satisfied if she could buy a farm with lots of animals, including cats (her favorite), horses, dogs and maybe even an elephant.
And someday she wants to help others.
“What I would want to do is be a doctor,” said Kendall.