Athena needs a miracle
By Sally Applegate/ Correspondent www.georgetownrecord.com
Thursday, October 19, 2006
Athena Reitano speaks volumes with her eyes. It's the only way she can speak these days. Trapped in a body that no longer works, she is as limp as a rag doll when her mother holds her to comfort her. Diagnosed at age 2 with metachromatic leukodystrophy, MLD, a rare disease for which there is no cure and no treatment, she still sees a little at times, and hears and understands everything. Her life expectancy is age 6. Athena is 5.
Georgetown artist Judi Bartnicki, herself a victim of multiple sclerosis, was heartbroken when she saw Athena's story. She can relate to what the child and her mother are going through.
"God, how much can somebody take?" said Bartnicki of Athena and her mother. "I know how much suffering I do with MS. I thought I had it bad. Just seeing that little girl's face, it broke my heart. It grabbed at the depths of my soul. I wanted to do something for her."
MLD is like having a fast-moving aggressive form of multiple sclerosis, with the nerves in a child's brain rapidly losing their myelin sheathing. Like MS, the disease's severe symptoms go back and forth.
"She's such a good girl. She's a fighter," said her mother, Carver resident Renee Reitano. "She even squeaks out a smile now and then. I don't know how she does it with all the things she's going through. We don't know whether she's blind. Sometimes Athena seems to be focusing and sometimes she doesn't.
"She can't talk or chew or swallow anymore. Her hearing is still there. Her eyes turn toward sounds. She's just all eyes. She says everything with her eyes."
Diagnosed with MLD in June of 2004, Athena has never walked. Balance and muscle control problems started robbing her of the ability to sit up alone and to crawl when she was about 2.
Reitano refuses to give up on her daughter. She is currently pinning her hopes on a gene replacement clinical trial scheduled to start in Denmark this December. The doctors conducting the study hope it will delay the disease's progression and even restore the myelin sheaths in children's brains "so she can get back everything she's lost."
The determined mom said Athena is doing better than many MLD children her age, because her organs are still working. She has been fund raising for her daughter, and more recently for the study in Denmark, which was originally supposed to start in September but has been delayed until December due to a shortage of funding. Drug companies tend not to fund research for rare diseases, because there is no profit in it for them, so parents of desperately ill children end up doing their own fund raising.
Helping hands
Bartnicki, an increasingly well-known pointillism artist, is working against time to create as much art as she can, in spite of having lost all feeling in her left hand. Her exquisite pointillism drawings can take 600 to 800 hours to create, one tiny dot at a time. Only by using a special brace that holds the paint brush in her left hand is Bartnicki able to create this work.
Now she has launched a campaign to sell a limited edition of numbered and autographed prints, with 25 percent of all sales going to fund the clinical trial for Athena's disease, and 25 percent going to the MS Society. Bartnicki has always given a generous portion of her sales to the MS Society, and is the only artist allowed to exhibit their seal on all of her work.
"Art is a gift and I want to share it," said Bartnicki. "That's when art comes to life. That's when you can see it breathe. Art becomes more meaningful when it can help somebody. I just want it to be meaningful."
Many people have been collecting Bartnicki's art for years, including doctors and lawyers from Texas, Ohio and France. Her art is on exhibit in hotels in California and Japan, and is part of the permanent historical display at Salem City Hall.
A segment of the TV show "Robi on the Road" was filmed at Bartnicki's residence in November 2005, and she appeared as a guest on the Jordan Rich radio talk show for half an hour last week, discussing Athena's MLD, her own MS and what it takes to create pointillism.
Bartnicki is a member of the Reading Art Association and The Rockwell Society of America, and has exhibited in Georgetown, Byfield, Amesbury, Magnolia, Hamilton and Wenham, Topsfield and Beverly, among other places. She placed third in a field of 500 entries at the Boston Home Art Show.
In the 1960s, Bartnicki won a full, four-year scholarship to the Art Institute in Boston, and has also studied with Edward J. Beaulieu of Montreal, Juli Ann Fiore of Danvers and Elmer Rising of Reading.
How to help
For this benefit sale to help Athena, Bartnicki has made a limited edition of her pointillism portrait of well-known trivia expert Morgan White Jr., who is known as The Man From T.R.I.V.I.A. Each print is numbered and autographed by the artist, and will cost $100. Call Bartnicki at 978-352-5831 for information on purchasing these authenticated collector's prints.
If you would like to help Athena but are unable to purchase a print, tax-deductible checks to help her can be made out to Athena's Hope Inc. and mailed to Athena's Hope Inc., 40 Pine St., Carver, MA 02330.
There's a brave little girl still fighting to survive, and Renee Reitano is hoping to have her daughter included in this winter's clinical gene replacement therapy trials. As she waits, Renee is treasuring this time with her daughter.
"I can still give her a big hug and hold her," said Reitano. "She's just like a rag doll. Nothing works. She's my own little doll. We're racing against time. The point is to save her life and the lives of other children with the disease."
Athena needs a miracle. Athena needs us.
*Judi Bartnicki is the mother of a good friend of mine who I went to grade school with. It's amazing to me that she's A. got MS and B. is still as talented as ever with her artwork. Please if you're so inclined, indulge in a new painting for your home... I know that Athena would appreciate it more than words can say, just look into her eyes... after all, they're the windows to her little soul. Keep her in your prayers please & the next time I bitch about MS, please... smack me. To see more of Judi's work with the MS SOCIETY:
CLICK HEREI am so very very blessed.
