TOUCHED BY LYME: Pennsylvania school district won’t let light-sensitive Lyme patient have specially made picture in the yearbook
Any light brighter than a cell phone's glow causes seizures for this teenager with Lyme disease. Yet she wants a graduation photo in the school yearbook. Unfortunately, school officials won't allow the inventive solution she devised.
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Nineteen-year-old Sami Sigel, from Warfordsburg, Pennsylvania, has chronic Lyme disease. In her case, the infection in her brain has made her so sensitive to light she’s had to spend the last four years of her life in darkness. She’s been homeschooled, doing her studies by the light of a cell phone. The glow from the phone is the most she can handle. Anything more causes severe headaches, vomiting and seizures.
She’s set to graduate soon, and she’d like to have her picture in the high school yearbook. But here’s the rub. The school has a contract with Lifetouch, a nationwide company that takes school photos. A Lifetouch photographer came to Sami’s house and took her photo with very low light, but it didn’t turn out well. Sami didn’t want that picture commemorating her in the school year book.
Using inventiveness, computer skills, and a special light, Sami ended up taking her own picture. One she’s happy with. One she’d be proud to have in the high school yearbook. But, the school refused to use it. Apparently, because it wasn’t taken by Lifetouch. (Contract issues? Formatting issues? Pure bureaucratic stubbornness? I don’t know. My call to the school hasn’t been returned.)
Her local TV station did a two-part story about Sami’s situation. Not just her battle with the school district, but also how Lyme has affected her life. (She never saw a tick. One day out of the blue she just got terribly sick, and never got better. Soon she had to stay inside her dark house just to survive.) I highly recommend watching both of segments.
The first one, Teen Living In Dark Fights For Right To Yearbook Photo, aired Wednesday night, May 19 on WHAG 25 TV.
The second one, Girl Struggles Daily To Live In Dark With Lyme Disease, aired Thursday night, May 20 on the same station.
Her friends have also set up a Facebook page in support of Sami.
Sami Sigel completed high school coursework under horrific circumstances. I’m sure many people in her shoes would have simply given up. Isn’t her passion, her willingness to keep going, her loyalty to education, something the school should celebrate? Isn’t that what our communities need more of?
If school officials don’t change their mind on this, they are teaching everybody the wrong lesson.
You can contact blogger Dorothy Kupcha Leland at dleland@lymedisease.org.
Thanks Dorothy for writing this & giving 2 links of news segments on Sami! 🙂
My feedback comments that haven't posted so far:
[quote name="Concerned Students"]We have some problems with this video as many of Sami's friends did not wear green as they are not in support of this issue.
Only 3 seniors and very few others had green on Wed.
This story does not include the schools side; is totally one sided.
Many of the students do not agree with this; feel that this large of an issue should not have been created.
Wearing green has been abused, it should be a symbol of Lyme Disease AWARENESS not some petty issue just because few people want to make a scene!Thank-You
Concerned Students at SFHS[/quote]
from bettyg:
Thank you for this well-done show! Can YOU IMAGINE living the life that Sami/family has lived for 4 yrs? I do since I have sensitivities too but not to Sami's extent.
[b]To above students; GROW UP! PETTY; you don't know the word & how lyme has destroyed many lives including SUICIDES! Now talk about petty!
Nothing was mentioned how Sami is a straight A student; the challenges she has overcome.[/b]
Thank you for 2-part series of Sami! Well done showing Sami's struggles having this devastating disease.
[b][u]Print off these 2 sheets back-to-back of LYME FACTS: [/u]
Lyme_Flyer-b73f3afae3327f641eb96f1b0a467c8c.pdf
Pertinent_Information_for_Medical_Practitioners.pdf [/b]
[u]Her school has DISCRIMINATED against her; she should be allowed to use her OWN HOME PHOTO for inclusion in her annual!
It's a MONOPOLY where ONLY the professional photos HAVE to be used![/u]
I've had chronic lyme 40.5 yrs; MISDIAGNOSED by 40-50 drs. UNACCEPTABLE!
[b]My tick came off folks' CUT CHRISTMAS TREE! Ticks live all 12 months including SUB-ZERO weather[/b].
Sami is a STRAIGHT A student who has worked hard to accomplish this; her graduation should not be marred by her NOT having her photo in her school's yearbook!
She is a ROLE model for lyme/co-infection students making the most of LIME she made LYMEAID of!
Sami, Happy 19th to you today 8)
bettyg, iowa lyme activist
mdjunction.com lyme board
group leader 🙂
I was an middle school educator for ten years before getting Lyme. Let me say that although I was a loving teacher, I also believed in following policy. However, this is absolutely ridiculous. Hasn't she gone through enough? The school and/or company needs to have a little more compassion and should have allowed it. I just don't understand. I can promise you if it was an administrator's or the companies child, there would not have even been an issue. It is who you know and what you know.
I'm with Martha. Follow proper procedures is good, but there comes a point when you must realize that it's a gross prejudice to certain people, like Sami. I hope she wins this battle. This is just ridiculous.
Alex K. -Lyme Disease Fighter