When Kristen Malfara’s son Morgan was diagnosed with a rare and often fatal neuromuscular disorder titled Leukodystrophyshe, she quickly discovered that home was the best place to care for Morgan even though it came with many challenges and extreme difficulties.
After caring for Morgan at home for three years, she founded the MORGAN Project after Morgan’s 3rd birthday to support and assist families also caring for medically fragile children with special needs, at little or no cost to the families. The organization serves children with physical disabilities as well as sensory processing disorders, like autism, by offering information on financial resources, used equipment exchanges, and much more by an interactive website and newsletter. Not only has Kristen carried out most of the work and development of the MORGAN Project while caring for her children, but she has proved the worth of the home-based care program in the most compelling way possible by keeping Morgan alive and well after 12 years of at home treatment.
In its 12th year, the nonprofit exists because of a small group of committed volunteers uniquely familiar with the needs of families that choose to care for their chronically ill, disabled children in their homes, despite personal sacrifices, financial burdens, stresses to the rest of the family, and emotional strain involved in doing so. The MORGAN Project serves family caregivers nationally. Most service recipients find the organization online, and many recipients have gone on to become volunteers.
The organization also operates Morgan’s Place, a therapeutic play center for children with severe disabilities. It has been designed to provide a safe environment for parents to bring their children with special health care needs and physical disabilities for hands-on therapeutic play, as well as creative and fun activities. Additionally, they offer caregiver and advocacy training, seminars on the various issues related to caring for children with special needs, navigating the medical and emotional hurdles, finding financial assistance, caregiver support, legislative issues, and much more.
Kristen has gone above and beyond for years with her determination and love for what she does. Morgan, who was told by doctors that he may never see his 4th birthday, is now almost 17 years old after Kristen’s hard work. Kristen believes that the MORGAN Project allowed her to become a better advocate for him because of being an advocate for others. Despite her own complications, she never failed in helping others. She hopes to help light the way in raising awareness to the disease, while inspiring other parents who desire to follow in her footsteps.
If you are inspired by Kristen and Morgan’s story, read more here on how you can volunteer! http://www.themorganproject.org/help-us/