October 28, 2014 (Fort Worth, Texas) Two amazing kids and their families have been selected for MedStar’s annual Trick or Treat event in partnership with the Berkeley and Pembroke neighborhoods in Fort Worth. These special children will be brought by a MedStar crew and ambulance; complete with special “MedStar Safety Clowns” all dressed up for the occasion.
The children selected for the program will be escorted by medical personnel from MedStar who will take them door-to-door with their families. These children would not otherwise be able to experience a true Halloween event with their families if it were not for the continual presence of the EMTs and Paramedics with MedStar, nor the hospitality of the Pembroke Drive/Berkeley Court residents.
The residents of the Berkeley and Pembroke neighborhoods do such an amazing job with these special needs children and their families. We are grateful for their willingness to host these children and welcome them with such open arms.
Children and Family Profiles:
Child #1: Reilly McMurray
Parents: Josh & Tiffany McMurray
Nominated By: Jill Hendrickson, RN
Condition: Reilly suffers from an anoxic brain injury after an accidental electrocution while playing outside at age 11.
Child #2: Jackson (J-Bird) Wallace
Age: 1 ½ years
Parents: Jenna and Michael Wallace
Nominated By: Tammy Baker, family friend
Condition: J-Bird has a form of Leukodystrophy called Krabbe (crab-AY) Disease. It is a degenerative disorder that affects the nervous system. The symptoms of Krabbe disease usually begin before the age of 1 year. Initial signs and symptoms typically include muscle weakness, feeding difficulties, episodes of fever without any sign of infection, stiff posture, and slowed mental and physical development. As the disease progresses, muscles continue to weaken, affecting the infant's ability to move, chew, swallow, and breathe. Krabbe disease is fatal, and symptoms grow progressively worse over the course of the disease.
Children who are diagnosed with the early onset form have an average lifespan of two years.
In the United States, Krabbe disease affects about 1 in 100,000 individuals and there is currently no known cure.
Other Information: Jenna and Michael have started a non-profit organization called “The Jackson Project”. The organization aims to educate and raise awareness about Leukodystrophy, provide support for affected families, advocate for expanded newborn screening, and contribute to research for a cure through various community events and fundraising efforts. For more information on Krabbe disease and to make a donation, visit http://thejacksonproject.org.
Posted on Tue, October 28, 2014
by Matt Zavadsky