I imagine back to the day my sister was born on June the 15, 1978, after four days of intense labor. I envision my parents floating helpless and scared in a sea of despair. Wondering what was wrong with their child? How did she turn out this way? She was a full term pregnancy, the why? The judging medical stares, as they poked and prodded trying to figure out what was wrong. A mothers cry for her child’s well being, an uneducated doctor replied “look lady, you’ll be luckily if there's anything ever right with this child.” My mother wept, as a marine friend visiting, literally sent the oriental doctor flying across the room. Yet, in all this commotion there’s Tara, 3 lbs 4 oz and 47 cm of pure fighting life. They knew she was going to be small, but nothing would have prepared them for this. At first glance her sheer size would stop your breath. A touch of her delicate, discolored skin would leave you wondering if she just might break and spill away. Her tiny fingers were crocked and bent to a path of their own. Located on each foot were matching conjoined toes. As the chaos continued to surround her, Tara bravely endured this assail while absorbing in this new waterless life. The invasion had stopped, now safe in her incubator, unfamiliar to any of the pain she would have to endure, and unwise to societies playground rules of normality.
Eventually, the numerous exhausting tests and accusations had ended, and my family finally got to leave the cold walls of the hospital and return to the safety of their home. Attempting to flow back into the rhythm of life, but now with a tiny new child, fearful of the future to come. My Mom and Tara would continue to endure many agonizing tests throughout the years to come, essentially which lead to the diagnoses of a heart murmur in Tara. After coming home, my parents came across an article, in
The Wisconsin State journal, about the serious health hazards of Urea formaldehyde. The more they read they became concerned that their trailer, purchased only a year early, may have been a Death trap all along. The place they called home, their safe haven, could it be a toxic cocoon my mom carried her child in and brought her unknowingly back to? They immediately brought this article into their doctor, who in turn wrote them a script to “get the hell out”.
The home ended up being condemned due to Urea Formaldehyde levels being so high. My parents obtained council and filed a lawsuit against the building and selling company of their mobile home. The suit was a crazy ordeal and basically, was put best by my family’s’ lawyer, "a hell of a mess." Our attorneys were withdrawing mid case, bringing in lawyers from Minnesota to finish what they started. Apparently, these new lawyers had more background in formaldehyde cases. Needless to say, in all the disorder one of our lawyers and the Minnesota lawyer had a lack of communication and some very important paperwork, for the right to have expert witness, did not get filed, impairing our suit. My parents, who's daughter fought against a terrible illness since birth, lost due to a shocking lack of knowledge on this dangerous substance and what I like to call shady lawyer syndrome. So they incorrectly diagnosed Tara with some rare skin disease she had minor similarities to, because they could not prove formaldehyde caused her symptoms. Since they did not have enough knowledge on formaldehyde, because there hasn't been enough research done. Yet even if the research had been there, we couldn't use expert witness. So rare skin disease it is, case closed. Good luck. In the end my parents were left with a sick child and few answers.
Tara’s problem continued for many years and got unbearably worse before it got better. Eventually any eyelashes she did have fell out, and what didn't she plucked. Without the protection of lashes, Tara's eyes where constantly vulnerable to her surroundings. Leaving her eyes extremely red, consistently tearing up, and encrusted with yellow infection. I remember kids being very mean chasing us home on bikes devilishly singing, “Tara cries blood” repeating the chant while running over our toes “Tara cries blood”. Rashes had become a consistent part of life, and hair grew only where her pigment survived. Sores where frequently showing up under her breast and underarms. The wrong move would tear open the seemingly, endless healing soars, literally leaving her open to the world. Tara’s body meant to protect her had become her tomb of torcher. Around Tara’s mid 20’s her skin and eyes started slowly healing. The sores became smaller and more manageable, still wearing their welcome. You also see her to this day curling her hand in hopes you won’t notice her fingers flaws. On the top her head is a bald spot that never did grow hair and scattered bald patches remain throughout her head. Due to this, she will wear her hair one way only and that is up. I recall her one-day saying to me “I just want to be able to wear my hair down.” Tara, don’t you think that’s a bit much to ask for, feeling normal?
I can see the physical damage, I have shared in her emotional damage, and I’m truly scared of her internal damage. The totality of these problems has caused Tara a great deal of pain, anger, and embarrassment in who she is. It’s time that someone fights back. Today she has three beautiful, healthy, wonderful children and a Dad who loves them all so. Tara has dedicated her life to being an exceptional CNA, caring for others as if they are her own family. Ironically, this profession allows her to feel somewhat in place, in a world full of judgments. The time is now for Tara, to love Tara and truly be the beautiful, proud, wonderful mother she is and believes it. After all, doesn’t she deserve the ability to let her hair down?
In conclusion, this is the story as I remember, from what I’ve been told. I know so much reside in what I don't know. I do know however I will not stop in my hopes to find Doctors that may be able to help Tara. Thus this has begun my investigation. So hop on for the ride, I’m here to find out on behalf of my sister, who and/or what contaminated her pie.
Since my last post I have laughed, cried, gotten pissed off, and hit many dead ends. I've got this box of info on Tara from my Dad, and it's over loading my brain receptors. It has everything I could ask for on her, the lawsuit and the most exciting, indications of other children affected for part or all of their pregnancy term (see above). At first I submerged myself into the endless stack of papers. It was so overwhelming; I had to stop and just focus on becoming knowledgeable, what is formaldehyde? What do we know about it today, that’s changed? So that is what i did, and it made me sick.
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