The Valley News • www.myvalleynews.com • June 27, 2014
B-12
Health
Local foundation aims to combat Krabbe disease Alex Groves Staff Writer Few people know what it’s like to see a loved one struggle through Krabbe disease, a debilitating and ultimately fatal condition that impacts the nervous systems of infants and young children. Krabbe causes a young child to develop symptoms of irritability, muscle weakness, feeding difficulties and episodes of fever as well as slow mental and physical development. Muscles get even weaker as the disease progresses, making it nearly impossible to chew and swallow food, move and breath. The disease is nearly impossible to treat if it isn’t caught in the initial stages of an infant’s development, and once an infant begins to exhibit symptoms of the disease, it’s too late to cure. That’s why Steve Aldrian, cofounder of The Peace, Love & Trevor Foundation, has been leading an effort to give Krabbe disease more recognition. He has been reaching out to the California Legislature in an effort to include Krabbe in a list of diseases that expecting parents can check for as soon as a baby is born. But Aldrian’s desire to fight the disease extends past prevention; he has also reached out to families who have children suffering from Krabbe with monetary support and advice through the foundation. Aldrian and his late wife Nicole were motivated to start Peace, Love & Trevor after their own son, Trevor, was diagnosed with the fatal condition. They wanted to provide resources for other people who were dealing with the same kinds of struggles because they knew firsthand how difficult it is to raise a child suffering from the condition, Aldrian said. “My wife and I felt we were
blessed to have the financial ability to care for our son and we had a lot of close family and friends that were willing to assist in caring for him,” he said. “But we knew that wasn’t the case for other families and that was kind of the seed for our effort to help other families.” He said his foundation finds families on online bulletin board websites and tight-knit internet communities and offers those families – who are often unsure of where to go or what to do – help. “We find these families and reach out to them and offer them assistance,” he said. “We let them know we have a son with Krabbe and point them in the direction of doctors who have experience (in treating the disease).” Aldrian said he refers them to specialized doctors in places like Pennsylvania and North Carolina who can give their child the right kinds of medications and treatments for symptoms like irritability or pain. But that’s certainly not the only aim of the foundation, which takes into account a family’s extenuating circumstances and difficulties. Members of the foundation once worked on a van conversion for a woman suffering from Multiple Sclerosis who had a child with Krabbe. Because of her MS, the woman had difficulty picking up her child – whose limb function was reduced by the disease – and placing him in the van when she needed to go places with him. The foundation worked on making changes inside the van so that the woman would not have to worry about picking her child up anymore. However, in spite of their success in helping others, there have been some dark days for the Aldrian family. Steve’s wife, Nicole, developed
Krabbe disease, a debilitating condition in infants and young children, is nearly impossible to treat if it isn’t caught in the initial stages of an infant’s development.
breast cancer and recently passed away on May 12. Steve, who once had the support of his wife in caring for their now 6-yearold Trevor, has found it difficult to be a parent all the time. He has to bathe and feed Trevor, who is completely dependent on the help of others in his current state. He also has to care for Trevor’s twin brother, Tyler, who doesn’t suffer from the disease. “I definitely notice the effects of the absence of my wife, who I miss dearly,” he said. And in spite of his efforts to get the California State Legislature to offer Krabbe testing for all recently born children, Aldrian has come up fruitless due to both the state’s budget constraints and the rarity of the disease itself.
“Unfortunately, there are 7,000 rare diseases out there that people aren’t familiar with,” Aldrian said. “To test for this disease specifically is not something we would have ever done.” Aldrian said that the disease’s rarity makes it a hard sell for testing but that his foundation still supports any legislation that would require such a thing. He said early testing is so important because the only time the disease can be effectively treated is when a child is asymptomatic. Amy Zebrack, a close friend of the family and a board member for the foundation, said she has hope that the foundation will someday see testing for Krabbe and similar diseases available. “I pray every day for it,” she said. “It’s very sad to see these kids in
this condition.” She said she’s proud of the effort that Aldrian has made to bring awareness to the disease as well as the effort he’s made to help other families. That’s something Aldrian said he’s not giving up anytime soon. “We understand that until newborn screening exists, there’s going to be a need for our foundation,” he said. “And we will continue to assist families whose kids are born with Krabbe disease and don’t know where to turn.” For more information on The Peace, Love & Tr e v o r F o u n d a t i o n , v i s i t www.peaceloveandtrevor.com. To comment on this story online, visit www.myvalleynews.com.
World War II veteran shares what it was like to be dive bomber, gunner Alex Groves Staff Writer World War II veteran Sid Zimman shared what it was like to be a gunner and a dive bomber for the Marines in the South Pacific during a presentation that was part of the “World War II Experience,” a series of lectures that give people insight into what World War II was like and what soldiers went through. The presentation started shortly after 1:30 p.m. on Saturday, June 21 and Zimman spoke before an audience of more than a dozen different people at West Coast Ammo in Temecula. He discussed
A photo of Sid Zimman as a USMC Private. Zimman enlisted in 1942 and was discharged in May, 1946 as a Staff Sgt.
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his motivation for entering the war, his experiences in boot camp and his experiences in combat itself. Zimman – a child of Jewish immigrants from Lithuania – enrolled in the Marines in 1942 after he finished his high school education in Michigan. He said he entered the Marines for two key reasons; one was that he wanted to join the branch of the military he thought was the best, and the other was that he wanted to represent Jewish people as a soldier. Linda Dudik, PhD, who organizes the veteran talks, said that there was a common conception among American people in the 1940s that young Jewish men were not involved with the war, at least not in a combat capacity. She said there were certain people who thought Jewish men were only in quartermaster – providing supplies and clothing to other troops – and this was in part because of anti-Semitism that was rampant in the ‘30s and ‘40s in the United States. When Zimman signed up for the Marines, he was sent to the Marine Corps Recruit Depot in San Diego. Normally enlisted marines located to the east of the Mississippi River were sent to Parris Island boot camp in North Carolina, but the boot camp was full and Sid was sent west instead. From there he began his journey of being a radio operator, gunner and bomber. After his initial period of training at the boot camp, Zimman had to choose a Marine Occupational Specialty (MOS) as part of the Marines and he chose to be an aerial radio operator which meant that he went to Jacksonville, Florida, radio school to learn how to operate a radio in an airplane 10,000 feet above the ground. He later went to gunner school at Yellow Water, Florida, to learn gunning operations before he left to Sanford Fla. to participate in operational training for aircrafts.
Sid Zimman speaks of his WWII experience as a gunner on a SBD dive-bomber during a presentation held at West Coast Ammo in Shane Gibson photos Temecula on Sat. June 21, 2014.
Zimman would be stationed in various locations before eventually being assigned to the newly formed Squadron VMSB-341 as a bomber. His position as part of the Marine air corps made him unique. The percentage of airborne Marines was less than one percent of the military at large during this time, according to Dudik. As a bomber, Zimman would release bombs from his plane as the plane traveled straight toward its target at a 70 to 80 degree angle. Zimman said such an operation was very unforgiving and very difficult to pull off sometimes because if a plane didn’t pull out in time a pilot could be risking serious injury or death. But Zimman said he felt very grateful not only for the plane, an SBD (Slow But Deadly) Dauntless Dive-Bomber, but also for Lt. Albert Alfred Black. Black was the pilot of the plane who maneuvered it while Zimman dealt with bombing and gunning. “If you lined up a bunch of guys, maybe he wouldn’t be the first guy you chose,” Zimman said. “But
he attended to business. He never equivocated and he did his job. Zimman and Black flew numerous flights together in the South Pacific, performing airstrikes on airfields, anti-aircraft artillery, ammunition dumps and shipping in places where Japanese Naval Fortresses had been established like the islands of Rabaul and Munda. After two years of combat, Zimman would eventually return home to the U.S. Later, in 1945, his journey would come full circle and he would take on a job as a radio instructor at the El Centro Marine Air Base. Zimman, during his time speaking, said he was glad for the work that Linda Dudik does. He said she has tried to keep the memory and facts of World War II alive and her passion for doing so is evident. “Professor Dudik is tenacious in her presentations and her research,” he said. “And while others leave no stone unturned, professor Dudik leaves no pebble unturned.” To comment on this story online, visit www.myvalleynews.com.