This is a
story I had sent the the newspapers and the new media and was on tv last night.
The tv station was so mad at the school district, they are running it 4-5 times
this week and are following us to the school board meeting next Tuesday, 27th
of May to film as we speak to the school board. We may be getting an attorney
to force the issue and Katie is gathering a large group of students to protest.
We will hand out flyers with her story and hope that hundres of students come
to the board meeting...
Please read and encourage your area media to focus on Cystinosis, our children are often by passed as they don't appear ill. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I would like you to consider our daughter's story and her struggles with a rare medical condition called Cystinosis. Katie was born healthy and strong in 1985, but began to lose weight immediately which continued into her 11 month of life. At the time we were concerned with her older sister, Sarah, who also had stopped growing and at 3 years, weighed only 20 pounds. Sarah and Katie were taken to the Dr. for an unrelated reason, when through a receptionist window, I was told that Sarah wouldn't live past the age of 5 yrs, handed a scrap of paper with a phone number on it and told that OHSU couldn't see us for 30 days.
Go home and wait.
Devastation and fear were overwhelming, our perfect daughter, Sarah, dead by age 5 years?...I had 24 months left with the child that I so desperately wanted? We saw Dr. Neil Buist at CDRC 30 days later and much to our surprise, he immediately diagnosised Sarah and pointed to baby Katie and said,"she will not survive much longer if we don't get her medicines started". I didn't understand, he surely must have been confusing the girls, we were here for Sarah, not Katie..."No," he said, Katie appears to be very ill herself and he felt she also had Cystinosis.
One week later, during Katie's first birthday party the phone rang, it was the clinic calling to tell me that Katie also had this rare incurable illness. I turned to look at the room filled with family and joy and thought, it's all over-both of my children will not only not survive this dreaded illness, but will suffer so much pain. Astonishment and shock were replaced with words of truth, our daughters were diagnosed with Nephropathic Cystinosis, a rare metabolic illness that would require a kidney transplant to survive. Multi-organ involvement throughout the body would rob the girls of a chance to play contact sports, play outside without painful eye sensitivity, and, a chronic and overwhelming dehydration as their tiny bodies rid themselves of all the water they so voraciously drank. That volume topped 2-3 gallons every day. Their only chance at survival was a host of medication to be taken every 6 hours without fail. At the time the only game in town was an experimental drug called Cysteamine. The compliance was so severe as the medication was like drinking fuel for a vehicle laced with phosphorus and rotten eggs. The girls were sickly most of the time. Failure to thrive, or Fanconi's syndrome was in full effect, causing them to appear younger then their years. We forced medication on these children in a militant fashion, desperate for our girls to live just a little longer.
As time went on the girls slowly began to turn a corner: they played longer, they laughed again and for the first time since breast feeding, began to eat food that was more than a bird's meal. They began to gain weight again and, still taking the medications, began school. They were teased for the smell that emitted from their pores, they were teased about the hand tremors from the medications affecting the central nervous system and cleansing out the deadly amino acid that was slowly killing them, called Cystine. Through it all, they strived for normalcy. They were featured on the news, in magazines and on television. At that time in our Oregon home state, were we lived, they were celebrities as Sarah and Katie were 2 of only 4 little girls in the state with this illness. A tight bond ensued between the girls as they understood why they had to take meds, understood why they had so many blood draws, and understood that sometimes their moms cried when they talked about Cystinosis.
During this time, the Oregonian newspaper ran a story about the girls. A grandmother sat in her grandson's hospital room reading it and ran out to the Dr. in the hall..."This is it. This is what is wrong with Mark" That Dr. called up to OHSU and within an hour, Mark was lifeflighted to OHSU with the diagnosis of Cystinosis and became the 5th child living with Cystinosis in Oregon.
Sarah required a transplant in the summer of 1996, receiving a kidney by donor and had many, many rejection episodes. Many illness and surgeries ensued, including a coma from encephalitis, yet to her amazing credit, graduated from Mountain View High School, in 2001.
Katie had her transplant from a kidney donated by her mom in 1999. She has faired well until the summer of 2002. She became desperately ill with a terrible bout of E. coli and was in the hospital with HUS: a syndrome of catastrophic proportions that depletes the platelets and destroys the kidneys. She was out of school a great number of days recovering and today is still weakened by the infection that nearly took the gift of life she so desperately clung too.
Katie is a senior at Mountain View High School and is struggling with another issue, something that has plagued this child since the first day of school. She is going to be a couple of credits shy to graduate this year. Due to her illness and medical condition, her dad and Katie and I, have petitioned the school for a special request: We asked that Katie be allowed to walk in the procession, not get a diploma as she will have to earn that in the summer with makeup credits. We asked Mr.. Ross, the principal, and was told "No". He referred us to Gary Kip, Assistant Superintendent. Gail Collin, a secretary at the office remembered Katie as a sick little girl in school for her Jr. High and advised we write a letter with added chart notes from the Drs. and anything we could add to convince "the powers that be" to allow her to walk in the ceremony. We did send a letter with documentation to Mr. Gary Kip and were told that the school Board would meet on Tuesday night 13th of May and we would have our answer on Wednesday morning.
Friday, May 16, I got a call from Rick Melching, Superintendent of Evergreen School District, 6 weeks after our intial letter to the District, who told me that he hadn't spoken to the Board about Katie, he just knew the policy and that was that a "rule is a rule, black and white, no exceptions" Through my tears I asked that he call the board and personally ask every single member to make a special accommodations for Katie.
From the day in the Drs.office when I was told that Sarah would die before age 5 years, nothing has been black and white-in reality it is all gray. Rules are made to have exceptions in certain cases and this is one of them. We aren't asking for a free ride, only a chance for our daughter to enjoy the moment in her short life that she may not have at a later date. Rick Melching said he would call the Board, but wouldn't guarantee that they would approve.
Katie has struggled through medical conditions that would topple grown men and walked in a PE class with absolutely the lowest amount of platelets you can have without needing a transfusion , as she needed the grade. She has vomited in the bathroom for hours, a side effect from her life saving medications yet still `Peer tutored` as Mr.. Bernstein , Vice Principal, relied on her kindness towards the freshman class coming in to MVHS. Her optimism is eye popping and she tries until she drops. She isn't asking for a free diploma, just a chance to participate in a ceremony that culminates her efforts for the last 12 years through an illness that she was never supposed to live past the age of 5.
What message does this send to a child who had a chronic life threatening illness? Unfortunately, when she is excluded from a program that celebrates how far you have come, it communicates to her that there is no expectations for her because what she did in 12 years, with an unfair playing field of children with no health issues, wasn't good enough: yet she will be left behind and left out of something that she worked so hard for.
Many times I have been told to put my children's education on the back burner and concentrate on saving their lives and to my surprise, my emotions are the same. I feel that her strength in trying to accomplish a goal of completeing high school and walking with her class, completes both goals. She lives for autonomy and blending in, by excluding her from the one thing that has driven her from the first day of kindergarten, seems to put a nail in her coffin.
Please, please approve this story line and help a young women convince a chool Board to allow her to attain her goal of walking in the graduation ceremony of Mountain View High School with her peers.
She may not live to do it according to the rules of Evergreen School District.
David and Jane Lemar Jane Lemar
We received the DENIAL from the School board regarding Katie's request to walk in the ceremony. It came in a letter via email after a statement was faced to the media and posted on the Evergreen School District website. They stated that we had asked based on a medical exception then based their decision on her academic record of only having 17.5 credits at year end, without finals being done this coming Thursday or Friday. They only talked to her renal Dr. and he was quoted as Cystinosis not being life threatning, said there were 12 patients in Oregon...(WHAT???) Since when? That cysteamine reached the brain and only affected the IQ. The board made the decision and stated that they got all the Cystinosis information from the Renal Dr. and didn't feel the "metabolic Dr. could add anything to Katie's condition or treatment" Final statement was that "Katie's academic, attendence or medical condtion doesn't warrent any special treament"
Radio Station Z100 in Portland, Oregon, decides to throw a Graduation Party for Katie. See the flyer
The Jun 3rd edition of the Asian Reporter and the June 1st edition of the Rafu Shimpo in Los Angeles, ran an article on Katie, "The Heart of a Champion". Read the Articles
The Oregonian Article on Katie's Graduation Ceremony. Read the Article
Katie's Graduation Ceremony. Written by Jane