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Memorial created 07-31-2008 by
Mary Jo
Andrew "Andy" Michael Burgy
December 30 1993 - March 25 2003

Love you Andy

This online memorial was created in loving memory of Andrew Burgy, whose life story is told throughout this memorial website. Please sign Andrew's guest book and let us know you came to visit. We will remember Andrew forever.

Andy came into this world at 8:35am on December 30, 1993.  This was a planned C-Section.  The twins were at 38 weeks and weighed 6lb. 5 oz and 6lb. 10oz.  Andy's butt was "stuck" so since it is difficult to turn twins a C-Section it was.  He brother followed him at 8:36am.  It was such an exciting time.  We knew they were going to be boys and we were all set.   Minutes later they realized that there was a problem.  All of Andy's nailbeds were blue.  His top lip was blistered and all of the skin on his middle finger was missing.  They believe that he had been sucking on it before he was born.  They said they had to do some testing, but they felt that they knew what was wrong with him, but told us not to worry.  Later that night they came to take Andy to the NICU.  They said he need to have special attention and protection.  They said he had a skin disorder-one with a really long name--that at the time there was no way I was going to remember how to say it.  Because of the C-Section I was mediated and didn't really understand what was going on.  All I knew was that my mom was crying and Andy was gone.  Alex was fine and quiet.  He slept for the first day of his life.  The doctors had a family come see us that night who had had a child that had what Andy had.  They told me his life would be difficult.  That he would be in pain.  They brought along a Sally Jessie Raphael show that had on adolesent kids that had Andy's disease and they looked terrible.  I could not believe that this was happening.  My pregnancy was perfect.  I did everything right.  I carried them to term...how could this all go so wrong.  Before I could take Andy home I needed to learn how to pop his blisters, how to feed him, how to bandage him and how to hold him.  It was a lot to learn, but I had never had a child before and now I had 2 and one who was sick...I didn't know any different, so we took them home and had our family. 

Andy was only 9 when he was taken from us.  Since birth Andy lived with a horrible disease called EPIDERMOLYSIS BULLOSA.  A disease that caused a tremendous amount of pain.  He had many surgeries and many painful bandage changes.  Although he went through all of this, he did have a wonderful life.  He was born an old soul.  He never let his disease ever get the best of him.  We tried to make sure that we didn't treat him any differently and that he got to do everything his twin brother Alex did.  He did do all that his brother did.  It may not have been the same way he did it-he adapted well to his limitations.  When Andy was born the doctors said to take him home and enjoy him while we could because we would not have him for long.  This is not something you plan on hearing after you've just had a perfect pregnancy.  

 

 

Even though Andy was born with an awful disease, he was not defined by that.  He was full of life.  He loved many and was loved by many.  He was a great teacher while he was with us.

He traveled by plane for the first time to Florida to celebrate his first birthday with family.  He traveled to Florida two more times after that.  He was granted a wish from the Make a Wish foundation and he was able to go to Disney and attend his Aunt Keri's wedding.  He and his brother has special 1:1 sessions with all the Disney charachters.  They sure did love the attention they got from Snow White, the Little Mermaid, and Cinderella!  They thought it was hillarious when Goofy poked out their mom's contact with one of his wiskers.  Of course Andy's favorite was Poohbear.  When he returned to Florida we went to the Islands of Adventure.  His favorite was the Jurasic Park ride.  He loved getting splashed in the splash zone.  We also went on a glass bottom boat.  He and his mom both got motion sickness and had to eat crackers, drink 7-Up and smell pepermint to help our sickness go away!  When not at the parks he loved to lay on a float in grandma and grandpa's pool.

When he was in first grade a dear friend of ours offered to take Andy to France to be able to bath in the holy waters of Lourdes.  For a 6 year old it was amazing how he enjoyed every minute of this trip.  He pointed out things that the adults missed.  He loved all the details.  He rode on a boat in the Sienne river.  Toured the gardens of France where he fell in love with the Tulips. He could not get enough of the beautiful stained glass windows of Notre Dame.  He loved eating croissants in bed and loved the fact that there was a McDonald's right around the corner from our hotel.  The train ride to Lourdes was amazing.  Such beautiful countryside.  In Lourdes we took part in the candle-lighting ceremony.  We stood in line to be bathed in the holy water.  Wonderful, warm, caring monks gently bathed Andy and prayed for him.  We ventured to the top of the Eiffel Tower.   He loved every minute of France.  We will be forever greatful to our friend Carol for taking us there.  Memories to last a lifetime!

 

Alex and Andy just hanging out.

When Andy and Alex were born...we were lucky in a way.  We never had children before so we had no idea how hard it was going to be so we weren't that scared about having two.  We also never had a sick child so we didn't know the difference.  We went at it head on. 

The dematologist that diagnosed what Andy had told us to take him home, enjoy him while we could because he wouldn't be here for long.  This he told us with a straight face while I held Andy with tears coming down my face.  No sympathy, no offer of tissue.  More like "That is how it is, so good luck."  Well, I took that as a challenge--we were going to beat it and we were going to show that doctor!

We had twins...more so than having a sick child.  I loved to dress them alike.  Introduce them to everybody.  Watch them sleep together.  Even in their "goo-goo, gaa, gaa" stage they seemed to be talking to each other and knowing what the other was saying. 

Alex was always very good when we had to tend to Andy.  Always really quiet and content.  Usually when we were done with Andy is when he would start to fuss.  He know that we had time for him now.  Andy's bilsters needed to be popped with a needle.  It is had to pop with sqirming arms and legs.  It took time to get used to it.  There were times when I would poke Andy.  Andy wouldn't make a sound, but you could hear Alex cry out from across the room!  The "twin thing" is very unique.

Andy had a tough time in the beginning.  He would get blisters in his mouth from sucking on the bottle.  Blisters in his throat just from drinking.  He would cry and cry and we couldn't help him.  I can remember sitting on my bed with him and just praying that God would take him.  How can he live like this.  I never asked God to take him again!

 

 

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