My life story.

 

I was born on May 9, 2000 at Toledo Hospital and was in the Neonatal Intensive Care Unit for 10 days.  I weighed 3 pounds 7 ounces and was 14 inches long.  I was born with several medical problems which included, two holes in my heart, an imperforated anus (born without a rectum), was missing my left radius bone and thumb, had two right thumbs and I am hearing impaired.  I was sent home with Hospice because the doctors couldn't find my kidneys.  After 5 weeks of living without a kidney, Dr. Bunch in Ann Arbor spent over an hour looking for my kidneys.  He found one small one, in the wrong place, working at about 35%.  Dad is now a Ohio State AND a Michigan fan.

 

On top of all of this, I didnt like to eat much.  I had a nasal gastric feeding tube when I was six weeks old.  Then we began repairing everything.  On August 25, 2000, the wonderfal staff at the University of Michigan Medical Center repaired my heart and my recovery rate was great.  I was home in 7 days.  In January of 2001, the diagnosis of Fanconi Anemia was confirmed.  That same month, the repair of my rectum was done - again the doctors at U of M made one for me.  In April of 2001, I had a feeding tube placed into my stomach because I still refused any food by mouth. 

 

In August of 2001 we met with a Hematologist who specializes in Fanconi Anemia at the Children's Hospital in Cincinnati.  I had a bone marrow biopsy perfomed, which produced good results.  There was no leukemia found and my blood counts were good.  In February of 2002 I had my extra right thumb removed, yet again at U of M, and came home with no complications.  (Except I didnt like my cast very much and I took three of them off within 48 hours.  Mom and dad still dont have grey hair after all of this - amazingly). 

 

Again in August of 2002, I had my annual bone marrow biopsy which was still negative for leukemia.  Now the researchers are still attempting to determine my FA gene.  At this point, they do know that I am not in the 5 most common gene groups. There are only 8 complimentation groups Fanconi Anemia at this time, who knows, maybe I will be my own group!

 

In January of 2003 I welcomed a new little sister, Grace, who does not have Fanconi Anemia.  Unfortunately, she is also not a bone marrow match for me. 

 

In February, just two weeks after Grace arrived, I had my adenoids out at Toledo Hospital.  All went well except I had to stay put for two weeks, no running or jumping or anything fun like that.  This was a little difficult for Mom and Dad but I got to watch a lot of movies and cartoons.

 

In July I had my annual bone marrow biopsy and again all went well.  Still no signs of leukemia and my blood counts are still doing well.  Things were not as good as last year but they are still good.  We also found out at this time that I am not in any of the known complementation groups for FA.  The researchers are still working on it though very diligently. 

 

In August, our family took a trip to Camp Sunshine in Casco, Maine for the annual Fanconi Anemia Family Camp (check out www.fanconi.org to find out more).  We learned a lot and I got to play with a lot of other kids and the volunteers (mine was Lyndsay) were great. 

 

Soon, I began preschool.  My teacher is Miss Emily and the aid is Miss Mary.  My bus driver is Miss Becky and I love them all.  School is so much fun and I have met some new friends that I love to play with.  They have helped me talk more and improve my coordination. 

 

On October 31, 2003 I did not get to go "trick or treat".  Instead I had to have surgery, again.  When I talk I sound very nasally and I had a small velum.  They did a surgery to repair this and make a permanent flap to reduce my nasal sounding voice.  I was in the hospital for 2 1/2 days and was miserable.  Thank heavens for the feeding tube because I did not want to swallow anything.   

 

The holidays came and I had fun with all of the family and especially opening gifts from Santa Clause.  Grace was not too interested in anything except for ripping paper.  We brought the New Year in together and were thankful for all that we have and pray for a breakthrough in research for Fanconi Anemia families everywhere.

 

I began Kindergarten in 2005.  My teacher is Mrs. Beebe.  I love it!!!!!!  I have  new sibling twins  (Isaac and Clara).  I love to play with them.  "I haven't had a surgery in while, boy is that nice."

 

This past summer I went to F.A. Camp, in Maine.  I had a ball meeting and playing with other kids with my same disorder.  I met the most wonderful friend, Amanda, there.  She is a college woman who took me swimming, canoeing, hiking, and to a campfire.  I really miss her.

 

In 2006, I started first grade.  My teacher, Mrs. Rex, is awesome.  Each morning I look forward to seeing my friends at school.  This year I also started taking tap dance.  My recital is in May, wish me luck!

 

Soon I will be starting 2nd grade at Frank Elementary, in Perrysburg.  I can't wait to see my friends and learn.  (My mom can't wait either)  My sister, Grace, will be going back to pre-school.  My twin siblings, Clara and Isaac, are 2 and 1/2 years old now.  They are fun to play with.  My aunt Nicki will be flying in from Atlanta to attend my "Fanconi Anemia Party" (fundraiser).  I can't wait to see her.

 

I had my annual bone marrow biopsy at Cincinnati Children's Hospital in August.  My counts were low, but "normal for me".