Name: Daniel Timothy Stachoviak
Form of EB: Recessive Dystrophic
Born: June 18, 1990
Died: June 6, 2002
About Daniel:Daniel was born at 2:59 PM on a warm Monday afternoon after a fairly easy delivery. It wasn't until they performed an exam five minutes after his birth that we realized there was a problem. He had blisters in his mouth, but we thought those were sucking blisters since his sister had the same thing. Then they unwrapped him and found deep red nails and a small patch of skin missing on one of his fingers. As they unwrapped him more they found both of his feet were missing the majority of skin.
The doctors were perplexed and called in several more specialists from the University of WI Children's Hospital. Nobody knew what was wrong so they moved him to the neonatal unit for observation and to protect him from germs until they knew something more.
At about 5:00 PM they called in a dermatologist from a different clinic for his opinion. He knew exactly what it was since he had seen it once in his residency and he was new to the clinic. He took blister samples for testing to determine which form he had and then left.
No one knew how to take care of him since it had been fifteen years since any other child had been born in the area with the disease. A well meaning nurse placed a feeding tube down Dan's throat since he was hungry, but was that ever a mistake. Within two weeks Dan went into respiratory distress due to blisters in his throat. He was placed in a tent with helium/oxygen to try and help him breath, while a specialist stood at the ready in case we needed to try and pop the blisters.
A month after his birth, he finally got to come home. We were scared but thrilled because he had such a sweet smile and good nature. Within three months he started developing abrasions on his eyes, but otherwise he was healthy and growing.
Everyday was a new adventure. When he wanted to start crawling, I searched around for something to help protect his knees. I eventually found a pair of cloth kneepads and created a pattern and started making my own. Afraid of falling, he started "walking" on his knees to get around, and there was no stopping him then.
Just before his 2nd birthday he went in for his first of many esophageal dilatation's. When his fingers started to mitten up he faced surgery to separate them, a total of five surgeries through his lifetime.
In 1993, there was suddenly a "spot" on his stomach that required removal. The results came back as malignant melanoma. The site was completely excised to make sure any traces of abnormal cells had been removed. Within 1½ years another spot appeared on his shoulder and required removal. Later a specialist reviewed the slides and determined that it wasn't malignant, but did warrant immediate removal.
School was another challenge in itself. Trying to juggle speech, OT & PT therapies into his curriculum while not causing him to overtire, but he lived for school. His beautiful eyes and smile always won over the girls, but it was his keen sense of humor and laughter that attracted everyone else. Soon he became involved in Scouts as a social avenue for him. The boys were very accepting of his limitations and soon found that he could do a lot more than they ever thought he could. His most prized possession was a First Place Peoples Choice Award for one his PineWood Derby cars. It didn't race well, but it sure looked cool.
He was always full of imagination and energy. He loved to put together Lego kits and started entering contests, winning certificates for more LEGOs. He also found clay and ceramics as a vent for his creativity, paying special attention to the fine details in almost everything. Everything he did in life he put forth 110% effort. He had definite ideas about almost everything and would not stop until they were done the way he felt they should be.
The following is a story that his classmate had written about him.
Dan was a kid who always made you laugh! If you were down, he would do something even if it was small to cheer you up! In the classroom he sat right next to me and I would always help him get ready and situated. See, Dan had a disease called E.B., well that's the short version because it's too long to say. Some days he would come to class with his hair all gelled up with colors! It would make the whole class laugh for the longest times. Every time Dan would come to school, everyone would yell, "Dan's here, Dan's here!" We all loved when Dan showed up. Even my teacher loved it. Because of his condition he couldn't always make it to school. Oh how he hated missing school. He loved when he was at school learning rather than being at the hospital. Whenever he had to go to the hospital, he hated how all of the doctors would crowd around him; he just wanted to be at school and around all of us. He was even a straight "A" student. He was very intelligent! I felt very loved when I was around him because it made me look at how much of a difference he made in my life. Just think, what if you had a disease? How hard it would be on your life trying to deal with all of the medicines, shots, and all of the doctors around you. Now just think how he felt all of the time. When he was in pain, he held it in. When he was tired he tried to stay awake and listen to the teacher. Just remember, never take life for granted.
One day something very scary happened. My teacher told me that Dan wasn't doing to well, and that they had to move up his birthday celebration. I was so devastated. His original birthday was on the 18th of June, but they moved it up to the 1st of June. We all had a blast at his birthday party, and I'm sure he did too. I know he loved seeing all of us show up and be there. He loved knowing that it was all for him, for his birthday.
So we all went back to school that next week and missed him. On Thursday morning, I heard from my teacher that Dan had died that morning at 12:35 AM. I ran out of the room and into the bathroom. I was crying for four days straight. Even at home I was crying. On the last day of school we all signed his year book , so when he's in heaven he can read it when he gets bored. On that morning, Mr. Krause our Principal read us a poem that he had made for Dan. It was great, but very sad. We also went in front of the school and planted a tree in Dan's memory. We are still getting a plaque to put on the school saying, "In Memory of Daniel Stachoviak". We will remember his happy smile, his cute laugh, and all the fun times we've had. I love you Dan!
MEMORIAL FOR DANIEL STACHOVIAK
Daniel Timothy Stachoviak was born on June 18, 1990 in Madison, WI to Timothy & Katie Stachoviak. He was diagnosed with RDEB within hours of his birth, and finally allowed to leave the hospital after about a month in the Special Care Nursery. Dan was loved dearly by his entire family, especially his older sister Elizabeth and his mother whom he lived with. Raised with the idea that he was physically limited but not "handicapped", he proceeded to live life to the fullest. Dan loved so many things including food, music, Scouting, Legos, art and sculpting. At weddings he could always be found on or near the dance floor with the women. He excelled in school earning a 4.0 in his final year, with the help of his homebound teacher Marianne Jackson. His eyes sparkled and his smile was so infectious that almost everyone melted when they met him.
In May of 2002, after several tests and a biopsy, doctors informed us that Dan had developed a rare complication of kidney disease due to amyloidosis that could not be reversed. Given the choice of how he wanted his treatment to proceed, Dan opted to forego kidney dialysis in favor of living his life. At his birthday party held on June 1, 2002 he requested that money be donated to D.E.B.R.A. of America to try and find a cure for his disease, although he still received many gifts. Up to 300 people attended to give him their love, some for the last time. In the early morning of June 6, 2002, while surrounded by his loving parents, Daniel made his journey to heaven to be with his brother Michael. He was laid to rest at RoseLawn Memorial Cemetery in Madison, WI. After his death, he received the Spirit of the Eagle Award through Scouting.
He is always in our thoughts and prayers, and is missed greatly by his family and friends. He was our inspiration and our hero! We love you Dan, and look forward to seeing you again in heaven.
Be Brave. Even if you're not, pretend to be. No one can tell the difference.
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