Aplastic Anemia - Ohio Chapter

1-800-747- OHIO 

www.AplasticAnemia-Ohio.org  

Our statewide organization serves patients and families whose lives are affected by bone marrow failure disorders. We are a 501(c)(3) non-profit organization and a chapter of the Aplastic Anemia and Myelodysplastic Syndromes International Foundation, Inc. (www.aamds-international.org). Several families (the Hedges, Worthys and Magills) who wished to turn their personal losses into something positive and empowering for those struggling with AA and MDS founded our organization in 1988. 

 Our mission is to:

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serve as a source of patient assistance and emotional support  

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provide educational materials and  

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financially support research into treating aplastic anemia and myelodysplastic syndromes.

 

One of our most satisfying efforts is to provide emotional support to patients and their families. Members volunteer their time listening and sharing information that may empower patients and families coping with AA and MDS. Although we all come to this group with different experiences and outcomes, we are united in our desire to help those down paths we've walked.

Volunteer editor and non-transplant patient, Bob Fehn publishes a newsletter that is mailed to over 200 families in Ohio. We meet in the Columbus area several times per year to conduct business and socialize. Every holiday season we gather to fill Christmas stockings which are delivered to every bone marrow transplant patient in the state of Ohio. Janet Puster, mother of BMT survivor Cassie, coordinates this year round effort.

 

Donations keep our organization going!

We do not charge a fee for membership, but encourage your support. 
Your tax-deductible gift can be sent to Linda Kaufman, 
mother of BMT survivor Rob and President of the AAFO, at:

 341 Orchard Dr., Granville, OH  43023

 

We want to hear from you.  E-mail us at aplastic@aol.com.

Our website has been made possible by
The Gjurecech Family
and is dedicated to
the memory of Ashley, 
whose enduring spirit guides us still.


Ashley's Story

It was Good Friday, 1989 and Ashley was having
nose bleeds and bruising. Her trip to the doctor's
office was the beginning of an eleven year odyssey
as Ashley and her family searched to save her life.

Her story takes the reader from early childhood to her
blossoming as a teenager, all the while dealing with the
turmoil and consequences of her treatments for
aplastic anemia. Her courage stands as an inspiration
to all who loved and knew her in a brief but memorable life.

The creation of this web site stands testament to her
concern for others who shared her diagnosis. One overriding concern of hers was to educate and inspire others.

Sadly Ashley is no longer with us but her story remains.
A loving and inspirational telling of Ashley's life has been written by her mother. If you wish to receive a copy please contact:

aplastic@aol.com  :  
 


Melissa's Story

On April 5th, 2002, the Gjurecech family had a new baby. Her name, Melissa Renne, was picked by Ashley for Dallas, if he would have been a girl, so, in Ashley's memory, they choose to use it.

When Melissa went to see Dr. Backes for her two-month well visit, Dr. Backes decided to do a CBC as a precaution. Of course we all expected it to be normal since Ashley had aplastic anemia, which is not supposed to be hereditary. Sunday morning Dr. Backes called to say he thought that the draw was a bad draw and should be repeated. He said Melissa's platelet count was only 23,000. He would call me back in a few minutes. He called back and said the outpatient lab was closed so could I bring Melissa to the office in the morning to have it redrawn. After I got off the phone I though about it and decided I could not wait until tomorrowso I called Dr. Backes back. He said he figured I'd call back and that he'd call the ER, but there might be a long wait. I did not care if I had to wait I wanted to know. Could Melissa be sick like Ashley? I was a nervous wreck after they drew Melissa's blood as we waited for the results. A doctor came in the room and said that Dr. Backes was on the phone and needed to talk to me. After three day's of tests they tried to give us hope but all the easy stuff was coming back negative. We were released and they watched her platelets for a few weeks. No improvement but at least they were not dropping. I had been in touch with Dr. Harris and the time came to go to Cincinnati. Going back to Cincinnati Children's had to be one of the hardest things I have ever done, but I could not let my sorrow prevent Melissa from getting the best care. The hospital has changed a lot in two years but many of the friendly faces were still there. Some of the nurses really didn't know what to say. They ran lots of tests and came to the clinical diagnosis of Amegakaracthrombocitopenia. I am not sure if I spelled it right. 

People with this disease usually develop aplastic anemia. So here we are again faced with the long road no parent ever wants to travel. I do not know if I can handle watching another one of my children suffer through all the pain, and uncertainty. But, as we all know you take one day at a time and enjoy the good, trying some how to make it through the bad. They checked Dallas' cord blood - it is not a match so they are currently running a search for a potential bone marrow donor. Her last platelet count was 15,000 so all we can do is watch and wait.

Right now Melissa is five months almost six months old and she just wiggled her way out of her car seat onto the floor. She picked up a toy and is looking up at me laughing. Her smile is amazing. I know from experience to cherish every little smile.