Assistant Managing Editor
WILBRAHAM Patricia Murray has not let a debilitating disease like Mastocytosis (Mast Cell Disease) stop her from what is most important in her life helping others.
To bring awareness to the obscure illness, Murray and her son Dustin Wood have used the popular Internet site Myspace.com to enlighten the masses via an American Idol style contest. All musicians on her Myspace friends list are automatically entered into the "Music Contest To Raise Awareness For Mastocytosis & Ehlers Danlos Syndrome (EDS)." Myspacers, friends and family members are able to go on her Myspace page and vote for their favorite singer. The top five receive cash prizes, and the number one spot a whopping $20,000.
Tied in the fifth spot currently is Wilbraham's own William Ferrarini. Local members of Myspace have until July 31 to go online and vote for their hometown musician.
Ferrarini's position is quite impressive considering that Murray has over 3,000 Myspace friends including many noted and Grammy Award winning musicians.
"It's a very complimentary situation," Ferrarini said modestly. "It feels good."
If Ferrarini does solidify a place in the top five, he said he will donate 25 percent of his funds to the Mastocytosis Society. First place comes with a $20,000 award; second place is $15,000; third is $10,000; fourth is $8,000 and fifth is $5,000.
"I just decided that it was something that I wanted to do," Ferrarini said about giving a portion to charity. "I know that I think it's important to contribute back."
He's no stranger in the giving department. In March he traveled down to tornado ravaged areas in the south to participate in the Supercell of Giving Benefit concert. He spent days down there fundraising for the American Red Cross to assist with their disaster relief efforts.
While down there tornado victims and people such as Cathryn Miller Gipson and Paul King of www.nashvillehype.com, the company that sponsored the benefit, fell in love with his song "Send Me a Miracle," a piece co-written by his son. That same tune seems to be winning over Myspace fans as well.
"[Murray] originally sent me a note saying that she was just in love with the song. That seems to have affected how people are responding to me," Ferrarini said.
Murray told Reminder Publications that Ferrarini's voice is fantastic. She said she and her son love to use inspirational music to help get them through the pains of living with their illness. In addition to Mast Cell Disease, she and her son have EDS and a condition called POTS (Postural Orthostatic Tachycardia Syndrome) which is caused by the EDS.
According to the Ehlers Danlos Foundation, "Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a 'glue' in the body, adding strength and elasticity to connective tissue."
Due to EDS, Wood had a funnel chest, a depression or hollow caused when the breastbone, the bone in the middle of the ribcage, is pushed abnormally inward. He had surgery almost four years ago to have a bar placed in his chest to hold his chest up. The bar was taken out in February 2008.
Murray is homebound most of the time due to systems of Mast Cell. It can cause her to have severe allergic reactions, hives, stomach problems, swelling, itching, breathing problems, blood pressure drops and flushing. She wrote on her Myspace page that she even has triggers from items such as "latex, many foods, medications, heat, cold, stress, pressure to skin, preservatives, dyes, chemicals, detergents, soaps [and] some plastics."
"I am basically isolated in my home 98 percent of the time unless I am going to the hospital. I am on oxygen and IV. I am IV dependent because my kidneys work too fast and I can't hydrate like a normal person. I have a filter in my room to purify air," she explained.
Murray and Wood, of Fairfax, Virginia, have been dealing with these issues since birth. She is personally funding the entire contest.
"We did not know [what we had]. Doctors kept misdiagnosing us. We lived our life in denial and just being positive. We've never been well so we don't know what it is to be that way," Murray said.
Since their illnesses are not widely known to the general public, they decided to mix their love of music with the effort of getting the word out about Mast Cell Disease and EDS. Murray's Myspace page is brimming with information, reference materials and links to other sites. Even unsigned musicians benefit by getting free press and their name out there through the voting system. Murray hopes to host two contests a year. Wood has also branched out to form a contest of his own for comedians. Murray said he has always used laughter as a way to spread joy. Since he is more mobile than his mother, and with the help of his service dog Rue, he will soon embark on a comedy tour titled "The Paving 2,000 Miles of Smiles Tour," where he plans on walking the entire Appalachian trail (2,000 miles) and performing at the comedy clubs around it.
"This is humanitarian work," Murray said. "Everyone's getting involved. It's been wonderful. We thank [everyone who has been participating] from the bottom of our heart."
To participate in the contest you must be a member of Myspace. To cast your vote or to find out more about the contest visit http://www.myspace.com/patriciamastoandeds. Voting ends July 31 at 11:59 p.m.
|Patricia Murray and her son Dustin Wood are spreading the word|