The Rowbothams meet with Sen. Jeanne Shaheen as arthritis advocates during their annual Washington, D.C. trip this past April. (Courtesy Photo) (click for larger version)
May 02, 2012PLYMOUTH—Ten year old Makenzie Rowbotham may appear to be your average fourth grader, but after being diagnosed with Juvenile Rheumatoid Arthritis at the age of four, she overcomes her daily struggle with arthritis in every joint in her body, and manages to be an advocate for arthritis in Washington, D.C. every year — hardly your average ten year old.
At a young age, Makenzie and her parents realized that there was something wrong. Though Makenzie physically looked fine, she was extremely sensitive, and was known as a 'cry baby.'
"It doesn't take much," said Makenzie's mother Wendy. "When she was younger, people would bump into her and she would start crying, and they would say they barely touched her. If someone so much as dropped a Lincoln log on her toe, she would start crying because it was the last straw; when you're already hurting all of the time, these little things were just on top of that."
Makenzie and her parents, Wendy and Scott, struggled in the early years of Mackezie's life to find a doctor that could help diagnose Mackenzie's condition.
"We went from doctor to doctor to doctor until we got to Boston, Mass.," said Mackenzie. "We found Dr. Sundel, and he said it was arthritis, while all of the other doctors we saw didn't know what it was."
The Rowbothams began trying to diagnose Makenzie's problem locally, but soon discovered that there were hardly any specialists that would be able to help with her problem.
"We just kept going south," said Wendy. "We started in Plymouth, and they said they didn't know if it was anything dangerous, and they sent us to see another doctor. We went to Concord and kept going south until we got to Boston Children's Hospital."
When Wendy and Scott noticed a large lump on Mackenzie's wrist, visiting a bone specialist helped lead them in the right direction to diagnosing Mackenzie's Rheumatoid Arthritis.
"We ended up seeing more of a bone specialist, and we was the one who did the arthritis test," said Wendy. "Makenzie had an MRI, and the doctor noticed a lot of inflammation around her wrist, and did an arthritis test. It was convenient because she got right into Dr. Sundel, while most people have to wait five months. We just happened to sneak in."
Due to the lack of doctors that specialize in Rheumatology, the Rowbothams find themselves traveling to Boston and braving Storrow Drive traffic often.
"We don't have a doctor in New Hampshire full time," said Wendy. "There is a Pediatric Rheumatologist who used to be at Dartmouth, but now she's in Burlington, Vt., and she comes back to Dartmouth once a month or something. So we don't really have a doctor here. There are a lot of families that come from Maine and Vermont to come to the same hospital that we do."
To help treat her arthritis, Makenzie takes various medications to help with the chronic pain, including Embrol 10 day injections, Methatrexate, Folic Acid and Tylenol.
The cost of various medications has been rising dramatically, making it almost impossible for some people with arthritis to be able to afford medication at all; the Embrol that Makenzie takes is $795 a month.
"That is an inexpensive one, and we're lucky that she's on Embrol because $800 is minimal compared to other medications," said Wendy.
Other medications to treat arthritis, such as Remicade, can cost from $7,000 per injection to $25,000.
"A lot of people aren't getting their medications because they can't afford to buy them, and they are getting further and further along, and they are getting more and more joint damage," said Wendy.
Makenzie is lucky to have a family that can afford her medication for now, but the Rowbothams have been arthritis advocates for quite some time, trying to bring awareness to everyone about what Makenzie and one in every other group of 250 kids is suffering from.
The Rowbothams visit Washington, D.C. annually, taking every opportunity they can to speak to New Hampshire Representatives and Senators about issues surrounding arthritis, and giving Makenzie a good idea about the United States government.
"We went there to visit Senators and Representatives to lower the prices on really expensive medicines," said Makenzie.
Throughout the course of their trip, Makenzie met with Sen. Kelly Ayotte and her Legislative Assistant Daniel Auger; Sen. Jeanne Shaheen; Congressman Charlie Bass' Legislative Assistant, Helen Dwight; and Congressman Frank Guinta and his Legislative Assistant, Kayla Priehs, to talk about arthritis.
"What we want to do is have them remember Makenzie and know her, so when these bills come up, and when they talk about cutting arthritis research, they can think about Makenzie and why she comes," said Wendy. "If we do more research, we can find a cure."
One of the things Makenzie and her parents talk to Senators and Representatives about is funding research, and why it's so important.
"We go to D.C. to talk to them about paying more researchers to actually find a cure for this," said Makenzie.
Roughly one in every 250 children has some form of arthritis, and arthritis is the leading cause of disability with 50 million people in the United States alone affected.
"Believe it or not, two thirds of the people who have arthritis are younger than 65," said Wendy. "Everyone thinks it's the other way around."
The Rowbothams were surprised that there were only 250 Pediatric Rheumatologists in the nation, which is why they have to travel to Boston Children's Hospital to get Makenzie the help she needs.
"One of the other things we talk to senators about is helping doctors who want to specialize in things like Pediatric Rheumatology or other specialties pay back their student loans," said Wendy.
With many aspiring doctors forced to remain in medical school for years in order to become a specialist in their respective fields, it seems many aspiring doctors hoping to have pediatric specialties by pass their aspirations because the cost of their education.
"The President has already earmarked $5 million to help repay the loans of doctors with pediatric specialties," said Wendy.
Research on arthritis would not only help Makenzie, but would help a surprising number of men and women who serve in various branches of the military, as well.
"Some of the research for the Department of Defense is on arthritis, and people are wondering why the Department of Defense is doing arthritis research, but the leading cause of soldiers to leave or be on disability is arthritis from their packs," said Wendy. "They weigh about 100 pounds, so they get arthritis from the constant carrying of these heavy packs that create wear and tear on their backs."
This year, the Rowbothams also spoke to everyone about a bill that has just been introduced that will create a forth tier of insurance.
"It is a bipartisan bill about health insurance tiers," Wendy explained. "When you get medications, there are three tiers — a $10, a $20 and say a $50 — and insurance companies want a fourth tier, which would be 20-30 percent of biological medications."
With some medications costing around $25,000 per injection, the Rowbothams see the need for a fourth tier, and addressed the new bill during their D.C. trip this past April.
"We are trying to get the House to co-sponsor this bill for a fourth tier, and then we need a sponsor from the Senate, so we also talked to them about that," said Wendy. "The fourth tier would be 25 or 30 percent of $12,000 or $25,000; that would be a lot."
Makenzie not only goes to talk business with the senators and representatives; after going for a few years in a row, she now knows most of them on a personal basis.
"Congressman Guinta is my favorite because he brought me down to the House floor last year, and this year, when I met with him, we walked into his office and I told him I had been studying state capitals, and he said he would quiz me," said Maknezie. "I knew them all."
The Rowbothams have also met Shaheen each year that they make the trip to Washington, D.C.
"We should have a Jeanne Shaheen wall at our house because we meet her every year," said Makenzie. "This is our fourth time meeting her."
Though the Rowbothams think it's important for Makenzie to be known in Washington, D.C., they see a lot of value to knowing and understanding how government works.
"It is also good for her to know what government is like because she should know that we vote for these people, and in a sense, we hire them to do a job for us, and if they don't know how we want them to vote on certain things, then they are going to do it their own way," said Wendy.
Makenzie not only speaks about arthritis and learns about government; she meets other kids , families and even beauty queens who have arthritis, and can relate.
"I met Miss Michigan, and she had to wait 13 years, and they told her she wouldn't be able to walk when she turned 18, and that she would be in a wheel chair for the rest of her life," said Makenzie. "Now she is 22 and not in a wheel chair; she is up and running and dancing."
Miss Michigan's resilience and recent research has demonstrated that staying active is one way to help relieve the stiff feeling that often hurts those that suffer from arthritis.
"Keeping them active is something they more recently found out is helpful," said Wendy. "When you don't move, you freeze up."
Makenzie has found several ways to keep active, including riding her bike and dance.
"I love to bike ride and dance," said Makenzie. "I recommend water jazzercise, and if you have a Wii, get a dance game because it exercises you a lot. My favorite is 'Michael Jackson the Experience.'"
The pool has also helped her to keep active and relieve stress on her joints.
"My favorite way to stay active is the pool," said Makenzie. "Swimming is also good because it's warm."
The Rowbothams also participate in a walk every May for arthritis.
"We do a walk every May in Manchester, at Fisher Cat Stadium," said Wendy. "We get a team together for that."
Also Makenzie hopes to be going to summer camp for the first time this year at Camp Dartmouth, which has a camp exclusively for children with arthritis.
"At least you know she can go to camp and they are going to be really good about making sure she gets her meds, because every single one of those kids takes pretty much the same medicine," said Wendy.
Camp Dartmouth would also give Makenzie a chance to be with other children who know and understand what it is like to hurt.
"The nice thing about it is that every child that will be there will be just like her," said Scott.
With school, friends, bring an arthritis advocate and staying active, the sky is the limit for Makenzie as she works toward finding a cure for arthritis.
"Her doctor has always told her there are no limitations for her to do anything," said Wendy. "The only time there is a limitation is if it hurts."
To learn more about arthritis, visit Arthritis.org, and to get involved with the Arthritis Walk, contact Margaret Duffy at the Arthritis foundation in Concord at 224-9322 or 1-800-639-2113; toll free in Maine, New Hampshire, and Vermont.