Ellary, daughter of Mr. and Mrs. Kinnane, and big sister to three-month-old Rylan, has nemaline myopathy. She is a bright, happy three-year-old.

Ellary is a very strong little girl with a big smile.

Cindy, her mother, held back tears as she spoke one late December evening after the big snowstorm. She described how Ellary loves people and music but with a prognosis of wait-and-see, it is a tough diagnosis to hear. She just left the hospital after being there September to November to return to their Portsmouth home.

Ellary cannot walk or eat and breathes with the help of a ventilator, but she can sit with her baby sister Rylan and give her hugs and kisses. She loves her baby sister so much, says Mom. Her speech is garbled but her mother can understand her perfectly well.

Ellary loves princesses, would love to fly in an airplane, and her special wish is to take a trip to the Walt Disney World Resort and Magic Kingdom Park in Florida to meet the princesses there.

At noon on New Year's Day, the Polar Bear Plunge takes place at Eastons' Beach in Newport, followed by a benefit party at the Atlantic Beach Club in Middletown, to raise money to help turn Ellary's dream into reality through "A Wish Come True, Inc." 

Her mom shared how Ellary has just recently learned how to get around in her wheelchair and, other than having some tubes to contend with, is pretty proud of her maneuvering skills.

Despite how painful it is to talk about this, Ellary's mother Cindy said she hopes to raise awareness for nemaline myopathy.

What is nemaline myopathy, you might ask?

According to the Nemaline Myopathy Support Group web site:

"First described in 1963, nemaline myopathy is a disease of voluntary muscle that is often non-progressive. The most common form of the disease is not fatal, although a rare form of the disorder is. Why is it called nemaline myopathy? Nemaline means threadlike, and researchers chose this name because of the presence in affected muscle cells of threadlike or rod-shaped material. The significance of these rodlike bodies is still not clear..."

The same website goes on to describe the symptoms:

"People with nemaline myopathy have moderate weakness in their leg, arm and trunk muscles, accompanied by some mild weakness of the face, tongue and throat muscles. Reflexes are decreased or absent. Affected children often have long, narrow faces with high-arched palates and slender body musculatures. High-arched feet and curvature of the spine are common, and the jaw may also be malformed. The severest form of nemaline myopathy usually appears at birth. Affected children have a marked weakness and a lack of muscle tone. Their respiratory muscles are weak, and death often occurs in the first few years of life due to respiratory failure..."

Through a mutual friend, Cindy Kinnane was put in touch with "A Wish Come True, Inc."

Founder Rosemary Bowers said the group "grants about one wish per week," with the average cost of a wish between $4,000 to $5,000. Theirs is the oldest wish-granting organization in Rhode Island, having been founded in Tiverton in 1982. They grant wishes to Rhode Island and southeastern Massachusetts youths ages 3 to 18 years old with life-threatening illnesses.

In their first year more than 28 years ago, they granted twelve wishes and by their official count taken in May 2010, the group had granted 1,250 wishes, according to Bowers. The wishes have ranged from shopping sprees, computers, to meeting famous people, as well as trips to everywhere from the Grand Canyon and to the Super Bowl.  

Unbelievably, every trip includes every member of the family. That way, the family can have time away from hospitals and just enjoy themselves, noted Bowers.

Besides a few essential personnel, mainly volunteers help run the organization. Everyone's mission is to spread the word, she said.

A Wish Come True, Inc. is not a national organization, so all beneficiaries are local children. Donors' contributions are tax deductible under the 501(c) (3) code. Rhode Island donors may also contribute to "A Wish Come True" through the United Way by noting the group's pledge number "51817"at the time of donation. 

The Polar Bear Plunge takes place at Eastons' Beach in Newport at noon on New Years Day, Saturday, Jan. 1, 2011, followed by a benefit party at the Atlantic Beach Club. Both events will raise money to help send Ellary to see the Disney princesses in Florida through "A Wish Come True, Inc." 

Please join them at either or both events if you can, or consider a direct donation to A Wish Come True, Inc which can also be made through this website.