M.O.R.G.A.N Project Story of Infinite Love, and Parents Who Refused to Give Up
By Maria Sonnenberg // December 9, 2013
2013 central florida humanitarians
ABOVE VIDEO: In 1997, Morgan Malfara was born with a rare form of leukodystrophy, a rare genetic disorder that affects brain function and arrives with a grim prognosis of progressive deterioration ending in death. Morgan was given a year, perhaps two, by doctors. Morgan’s parents, Kristen and Robert Malfara, refused to believe it. “There is always hope,” said Kristen Malfara.
The M.O.R.G.A.N. Project is a story of infinite love, and parents who refused to give up.
In 1997, Morgan Malfara was born with a rare form of leukodystrophy, a rare genetic disorder that affects brain function and arrives with a grim prognosis of progressive deterioration ending in death. Morgan was given a year, perhaps two, by doctors.
Morgan’s parents, Kristen and Robert Malfara, refused to believe it.
“There is always hope,” said Kristen Malfara.
In the meantime, the Malfaras devoted themselves to Morgan, as well as to helping parents, who like them, were caring for special-needs children.
“It takes an extremely exceptional person to recognize that it is our privilege, not just our obligation, to be loving caretakers to these very special heaven-sent angels and make their lives as rewarding as possible,” said Malfara.
To honor Morgan, the Malfaras created the M.O.R.G.A.N. Project, a national grassroots organization of volunteers who help enhance the quality of life of families with special needs children.
“It was our way to pay it forward,” added Malfara.
Among its services, the M.O.R.G.A.N. Project provides grants so families can purchase specialized equipment such as bath chairs, positional seating devices and other items that, although not typically covered by insurance, can greatly help a disabled child.
The nonprofit also administers a program that matches generally used items such a walkers, wheelchairs and adaptive strollers with families who need them. The M.O.R.G.A.N. Project also serves as a connection between parents of disabled children and available community resources.
The organization’s greatest accomplishment to date is Morgan’s Place, a sensorium in Melbourne. In this facility, state-of-the-art multi-sensory equipment helps children with limited access to sensory stimulation, be it from physical disabilities or because of sensory processing disorders such as autism.
A physically or mentally challenged child is often unable to interact with the environment in a manner the rest of the world takes for granted, yet a lack of stimulation could cause failure to thrive in these youngsters. Morgan’s Place, the second free-standing facility of its kind in the United States, brings together equipment that sparks touch, taste, sight, sound, smell and movement without the need for intellectual reasoning.
‘WHAT A MIRACLE CHILD!’
The M.O.R.G.A.N. Project has become a lifeline that connects families of disabled children with each other and with resources.
For her extraordinary impact on the lives of disabled children, Kristen Malfara earned the Women who Make a Difference Award, presented in New York City by Swiss watchmaker Longines together with Town and Country magazine.
In 2007, she won the Montel Williams Award and in 2009 was honored with the People Magazine/Major League Baseball’s All-Stars among Us Award. Malfara is one of this year’s semifinalists in L’Oreal’s Women of Worth awards.
However, for Malfara, the greatest of awards she has received is seeing Morgan alive and thriving. Now 16, the little boy who was not expected to live is a teen doing well at No Limits Academy in Melbourne.
“What a miracle child!” said Malfara.
ABOUT THE 2013 CENTRAL FLORIDA HUMANITARIAN AWARDS
The Central Florida Humanitarian Awards were created to recognize outstanding individuals and organizations that dedicate their Time, Talent or Treasure to help people in need locally – and around the world.
This year, more than 30 deserving humanitarians will be honored during the Gala, which will be held Thursday, Nov. 7 at the Hilton Melbourne Rialto Place, with the festivities beginning at 6 p.m.
“Over the years, our editorial team has had the distinct honor and pleasure of identifying and featuring the many members of our community who give back so much and are dedicated to reaching out and helping others, here and throughout the world, in a multitude of ways,” said Maverick Multimedia Editor-In-Chief Dr. Jim Palermo.
“We remain firmly committed to identifying and telling those stories and providing a timely media platform to recognize Space Coast and Central Florida residents’ altruistic contributions on a regular basis in our magazines, as well as SpaceCoastDaily.com,” said Dr. Palermo.
This inspiring and compelling event is sponsored by Brighthouse Networks, Health First, Brevard Physicians Network, Florida Pain, Forever Florida, MPAC ACO, Brevard Geriatrics, Community Credit Union, Clear Choice Health Care, Knudson Brain & Spine Law Injury Office, First Choice Medical Group, Space Coast Medicine & Active Living magazine, CentralFloridaMedicine.com and SpaceCoastDaily.com.
FOR MORE INFORMATION or to make a nomination call 321-615-8111 or e-mail SpaceCoastMedicine@gmail.com.