Hope's Story.

 

Hope was born on May 9, 2000 at Toledo Hospital and was in the Neonatal Intensive Care Unit for 10 days.  She weighed 3 pounds 7 ounces and was 14 inches long.  Besides being so little, Hope had several  medical problems which included, two holes in her heart, an imperforated anus (born without a rectum), has one kidney, was missing her left radius bone and thumb, had two right thumbs and is hearing impaired.  In addition, she was sent home on Hospice because her kidney did not function well. 

 

On top of all of this, she didn't like to eat much.  She had to be fed through a feeding tube in her nose.  We decided to go to the University of Michigan Medical Center to deal with several of her medical problems and surgeries.  They repaired her heart on August 25, 2000, and the recovery rate was great.  She 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 her.  In April of 2001, a permanent feeding tube placed into her stomach because she 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.  She had a bone marrow biopsy perfomed, which produced good results.  There was no leukemia found and the blood counts were good.  In February of 2002 the extra right thumb was removed, yet again at U of M, and came home with no complications.  (Except she didn't like her cast very much and she took three of them off within 48 hours. 

 

Again in August of 2002,a bone marrow biopsy was performed and this was still negative for leukemia. 

 

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, she had her adenoids out at Toledo Hospital. 

 

In July she had her annual bone marrow biopsy and again all went well.  Still no signs of leukemia and my blood counts are still doing well. 

 

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

 

Hope began Kindergarten in 2005 and loved every minute of it.  She had two new sibling twins  (Isaac and Clara). 

 

Time has really flown by these past years.  She has tried dance, piano, and choir at church.  Soon she will be starting 4th grade at Frank Elementary School, in Perrysburg. Grace, will be going into 1st grade and Clara and Isaac, will be attending preschool.  Hope says, "they are fun to play with".

 

We continue to have annual bone marrow biopsies that return decent results.  Over the years her blood counts have steadily declined, but we are not in "panic" mode quite yet.  We have had no medical problems for quite a while and are continuing to raise money for the Fanconi Anemia Research Fund in hopes of finding a cure one day. 

 

Hope lives each day to the fullest.  She is constantly smiling, waving and giving hugs to everyone she knows.  She is a true blessing to our family and so many around us.