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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Saturday, January 15, 2011

This Isn't "JUST" Aches and Pains

This story is from the Let's Move Together Arthritis Walk Orlando Florida website. The arthritis that Bean and all these other kids suffer from is NOT your grandmas arthritis. It isn't from old age, or an injury. It's an autoimmune disorder. THAT is why it is so serious. It can attack ANY part of the body. I debated whether or not to even share this. It's scary and it's depressing. But ya know what? It's REALITY for us.

A Tribute to the life of Jennifer Schott

Jenny Schott as a child

Jenny never wanted to be an outsider, and to her family and friends, she never was. But having been diagnosed with juvenile rheumatoid arthritis in 1980 when she was about 2 years old, she would soon find it impossible to live like everyone else. After a diagnosis during a hospitalization in Pittsburgh because of severe soreness and swelling in one knee, Jenny was prescribed increasing dosages of baby aspirin, up to 60 per day, to deal with the inflammation, soreness and pain. But, according to her father George Schott, the pain just got progressively worse as did Jenny's condition. "We would have to give her hot baths every morning just to loosen up her joints, and the aspirin never seemed to provide relief", says George. He continues,"As she grew and her condition became more complicated, her medications became more experimental ranging from extremely painful gold injections, steroids, growth hormones, to Methotrexate before they had much experience with proper dosage of this drug. The doctors tried all they knew, but treatment for the disease was not well known and she was very much an experiment for the doctors at that point".

Despite the severe pain and experimental medication, Jenny strived very hard to maintain a normal childhood keeping up with all the other kids until finally around the age of 8 when it just became impossible. While she excelled socially and academically, her physical condition was deteriorating quickly. But she tried very hard to not let her disability get her down. Jenny was an accomplished and articulate public speaker, winning speech competitions as well as reading from the Bible at church. While most of us are worried about standing out in high school, Jenny couldn't help but stand out in her first electric scooter which she now had to use to get around. Still she took it in stride and her scooters and eventually wheelchairs became part of her identity in her school experience. It never was looked upon as a negative thing as she continued to excel, graduating from her high school number one in her class with the highest grade point average, a huge accomplishment!

Jenny's High School Picture

It was in high school that Jenny started to experience what would become the highlight of her life, teaching and helping others. She tutored other students and eventually started her own tutoring business. After high school, Jenny was determined to make her dream of becoming a teacher come to fruition. She received a number of monetary scholarships to continue her education including acceptance into Rollins College and a full paid scholarship to Stetson University because of her excellent academic performance. But she could not accept them because it would have required her to keep a full academic schedule. At this point in her life, her medications and physical condition were becoming so extreme that this wasn't an option. However, determined as ever, Jenny learned how to drive a specially designed van so she could get back and forth to college completely on her own since living away from home at this time was not possible. So she enrolled in Seminole Community College (now Seminole State College) which allowed her much more flexibility. While at SCC, Jenny was Founder and President of a support group called "Inside the Outsiders", where students dealing with handicaps could come together and share experiences and provide support to each other. Jenny also continued to tutor students from a number of local elementary and high schools, and even other colleges. She graduated from SCC with High Honors and Distinction with a 4.0 GPA, was a Member of the Phi Theta Kappa Honor Society, and an Associates of Arts in Mathematics degree in hand.

Unfortunately, as Jenny was working hard to live her dream, the arthritis was working harder at destroying her body. "Over the course of her life, Jenny had virtually every joint in her body operated on and either totally replaced or fused by inserting steel rods in places like her wrists and ankles. It was surgery after surgery" reflects her father George. He continues,"Despite always being heavily medicated, none of the medications ever worked for Jenny". Still refusing to let the arthritis take over total control of her life, Jenny was able to get a job as a Mathematics and English teacher teaching students with learning or physical disabilities at a private school, and finally achieving her dream. At least for a short time.

George Schott with daughters Jenny and Laura at Kennywood Amusement Park, PA

Sadly, her dream became a physical nightmare. Her condition worsened until finally she had to leave the teaching field. Eventually Jenny was in so much pain that she had very limited mobility and spent much of her time with doctors, in hospitals, or at home in bed. Some of the medications she was given were so strong that they left her incoherent at times. The disease, as well as the effects of 20 plus years of drugs, operations, and experimentation, was affecting all of her internal organs. Her doctors, realizing how much pain she was in, kept her heavily sedated until finally they told Jenny that she had less than a year left to live. Jenny was at peace with this news, even orchestrating her own funeral service by selecting her clothes, readings from the Bible, and the music. With the help of Hospice, she spent the last six months of her life at home, mostly sedated to keep her comfortable as the arthritis finally took all control from Jenny's hands. And one of her last wishes was a very unselfish one. Jenny wanted to create a scholarship for handicapped students at Seminole Community College.

Jenny peacefully passed away at the age of 26, a fully accomplished teacher having taught many lessons to everyone she met whether student or observer. To this day, the "Jennifer L. Schott Memorial Endowed Scholarship", which was started completely with donations in her memory, is awarded yearly at Seminole State College to provide financial assistance to other handicapped students to inspire and achieve success in their future endeavors. Her father George sits on the board that chooses the recipient from the group of students applying for the scholarship.

It was years before George could openly speak about arthritis taking his daughter away from him. It also strained relationships with his other daughter Laura and ended his relationship with Jenny's mother. "Since day one, the Doctors told us that dealing with a child with a chronic condition would affect all of our relationships, especially the closest ones" he says. "The doctors also told us that Jenny was a textbook case of how extreme arthritis can consume a life and even take it".

Having separated from and eventually divorcing his Jenny's mother, George found great solace and support from his current wife Lisa. "The first several years after Jennifer passed, George did not talk about it with anyone" says Lisa Schott. She continues, "Eventually, the time came where he was ready to turn this life-altering experience into something that would pay tribute to Jenny and help other families dealing with juvenile rheumatoid arthritis".

George & Lisa Schott turning tears into triumph as they present Tony Ward with the first big check ($10,000) for the Arthritis Foundation.
George and Lisa approached their friends for help, through the Parrot Heads of Central Florida, a social club whose slogan "Party with a Purpose" accurately describes its members' desire to make helping others a routine part of their life and a fun experience. Their brainchild would eventually come to light in the form of a Bowling Tournament to benefit the Arthritis Foundation called "Fruitcakes in the Alley", named after the Jimmy Buffet song "Fruitcakes". In its first two years, the event resulted in more than $25,000 for the Arthritis Foundation to benefit Kids with Arthritis. The third annual event scheduled for the last weekend in January 2011 is already close to selling out the bowling alley. It's a weekend festival of music, bowling, camaraderie and of course raising funds and awareness for the cause of arthritis.

"We couldn't be more grateful for all the help and support of our fellow Parrot Heads in making this event a fun tradition that means so much to not only George and I, but also the Arthritis Foundation", says Lisa, now President of the Parrot Heads of Central Florida. "It has helped George tremendously to open up about and deal with all the emotions of losing a child, and rationalize what happened by helping others". Lisa also said "I am so proud of him for being such a strong, loving man and creating a legacy for Jenny that will live on and on".

George and Lisa Schott can always be found orchestrating the music and announcements from the Tiki Booth at the bowling tournament. And each year, there in a picture frame sits a picture of a beautiful girl with a warm smile named Jenny Schott, who may have lost her battle with arthritis but won the war by inspiring her father, stepmother, and many others to bring awareness and necessary funds for research for a cure to the illness that never kept her from fulfilling her dreams.

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