Oklahoma Mastocytosis Society - Our Stories






By Rick

This is a story written by one of our teen-agers that has Mastocytosis.  Rick is now 18, as the story you are about to read is a couple of years old.  Rick has not been able to attend school since 1994. Despite his not being able to attend school Rick is one the school honor roll.   He tries to make the best of each day and I am proud to know him not only as a member of the Mastocytosis Society, but as one of my best friends. 

Here is his story ...


During 1998, two events occurred in my life that have brought me much happiness.  The first occurred in the "Making of My Quilt Square".  My mom's eyesight prohibited her from making a square for me and I wanted so much to be included in the Quilt (the Mastocytosis Quilt can be seen on the picture page of this site).  This was brought to the attention of the staff at the school where I would have attended last year had I been able to got o school.  A call went out to the students in the Teen Living Class who had taken a course in quilt making.  Several of the students volunteered to work on a square for me.  However, a boy named Ramon was over enthusiastic to make the square all by himself.  Thus, the job was given to him.  He knew that my passionate interest is my computer and my web page.  With only a few weeks left in the school year, he worked on it during part of his lunchtime for several days so that it would be finished before school was out. He undertook this project out of kindness toward a fellow student.  My square is very special because it demonstrates the kindheartedness and compassion given to me by another teenager who I will never know personally.  In November, I was one of the members of The Mastocytosis Society who was at the Quilt�s Presentation at the National Institute of Health.

The second, and very lasting event, which occurred in July, was that I was granted a "Wish" by our local Make-A-Wish foundation.  Until my doctor submitted an application for me to be a "Wish" recipient, the people at Make-A-Wish had never heard of Systemic Mastocytosis.  They asked my doctor to provide them with detail information on my illness and the fact that I have not attended school in over 4 years and would not be able to return.

Two volunteers came to my house and asked me what one "Wish" I would make.  I knew that traveling for a fun vacation was not even remotely possible for me since I never feel well enough to leave the house for more than a short time.  They said I could ask to meet some famous celebrity, but I didn't feel comfortable asking that such a person would have to take their time to meet me because of my illness.  However, there was one �Wish� that I have wanted for the past three years a hand-fed Moluccan cockatoo. 

The Wish Coordinator called me and said that the Board of Directors had unanimously voted to grand my "Wish".  I found an avian breeder in Northern Virginia who had a baby Moluccan that had hatched a few months earlier.  The lady said this female baby Moluccan had been sold until that very morning.  It seems that the original purchaser was unable to have a bird until her new home was finished in Florida sometime later. A Make-A-Wish representative then called the breeder and assured her that if I wanted the bird, the check would be in the mail the next day.  When I went to see the baby cockatoo, it was love at first sight for both of us.  In fact, she laid in my lap and went to sleep with the breeder said was very unusual for a baby to feel so secure with a stranger.

I named my cockatoo "Mara" after a Star Wars female character that has red hair.  Her cage is in our family room where I spend so much time on the computer.  We listen to the local radio Oldies Rock n Roll station all day long.  She now eats Cheerios, Rody Bush Pellets, fruit, and all kinds of vegetables that we cook for her each day.  Mara is also potty trained.  Even when I am having a really "bad" day, Maria is always there to amuse me and help me forget how rotten I feel.  Moluccans live to an average age of 80 years, so she will be here for me for a long time.

Since I don't live the life of the average teenager involved with social activities and sports, I spend a lot of time working on my Start Wars web page. It has won several awards.  My web site was selected as one of only nine sites whose Internet address is imprinted on a Limited Edition Star Wars T-Shirt, which came out and readily sold out. I was contacted by eBay, the largest Internet on-line auction site.  Their representative said that their company needed a Star Wars website to advertise on because of it continuing popularity and they agreed that mine was the one they want to display their advertising. 

I continue to be a NBC Channel 4 Internet Weather Watcher for our local NBC news station and a Sky Warn Weather Watcher for the National Weather Service in my Area.

I am a member of the National Honor Society.  I also received my second President's Education Awards Program certificate signed by President Clinton for Educational excellence.

Even though much of my life is spent at home and I am unable to go to school because of Mastocytosis, I am determined to enjoy life.  Mara is really helping me do just that!  Her cage is right beside my computer in our family room.  Even during the days when my symptoms go in overdrive, I now have Mara to keep me company.  

I know that I will never be able to enjoy High School social activities like other teens since I don't physically attend school.  But I am determined not to let Mastocytosis ruin my life. Mastocytosis can completely alter normal lifestyle, but I have learned that we must not let it get the best of us.  I make every effort not to dwell on my symptoms but rather try to make each day be the best it can.  Mara and I will grow old together and that gives me lots of tomorrows to look forward to!



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