LOS ANGELES--(BUSINESS WIRE)--Ian Saur Sunga's diagnosis came late compared to other boys, says his mother Lois, because after he was born he was immediately flown to the Philippines where he spent his early childhood. Physically, he developed slower than other boys his age and had some muscle weakness, but it wasn’t until a family member who was a nurse visited the family that they realized something could be seriously wrong.
After reaching out to several local doctors and getting few answers, Ian’s family tried reaching out across the ocean, to Children’s Hospital Los Angeles (CHLA).
“When he was 9 years old, a video of Ian was sent to his uncle who works at CHLA,” says Lois. “That video landed in the capable hands of Dr. Leigh Maria Ramos-Platt, who happens to be a neurologist and the director of the MDA clinic at CHLA. “
Her initial suspicion was later confirmed – Ian had Duchenne muscular dystrophy, the most common fatal genetic disorder diagnosed in childhood. About 20,000 new cases are diagnosed each year worldwide, mostly in boys.
“Since then, Ian has been lovingly cared for by a team of wonderful experts who helps him prolong his strength and live a normal life despite of this dreadful disease,” says Lois.
CHLA’s National Duchenne Care Center Certification
In April 2016, Children’s Hospital Los Angeles was recognized as a Certified Duchenne Care Center by Parent Project Muscular Dystrophy (PPMD), a leading entity in the fight to end Duchenne muscular dystrophy, or Duchenne. CHLA is just the tenth healthcare facility nationwide – and the first in Southern California – to receive this designation since PPMD began qualifying centers in 2014.
“Being distinguished as a Certified Duchenne Care Center tells patients and families that Children’s Hospital Los Angeles is among the elite centers in the U.S. to go for the highest quality of care for those living with Duchenne,” says CHLA Neuromuscular Program director, Leigh Maria Ramos-Platt, MD. “I am proud of our team for providing the best expertise, best practices and also the most heartfelt approach to reducing symptoms and improving each patient’s quality of life.”
The Certified Duchenne Care Center Program seeks to ensure institutions provide exceptional clinical and sub-specialty services, rapidly apply new evidence-based knowledge, work towards accurate and meaningful clinical research outcomes, and comply with care standards established by the CDC Care Considerations.
“This designation highlights our commitment to multidisciplinary, coordinated care,” says Ashish Buttan BDS, MBA, who administrates services for CHLA’s Neurosciences Institute, which includes the Neuromuscular Program. “We now are recognized as a premier center for patients with Duchenne, but we are continuing to expand and better integrate the way we care for patients with all types of neurological conditions.”
CHLA’s Neuromuscular Program one of the fastest growing and most comprehensive programs in the region, treating hundreds of patients each year with neuromuscular disorders – including muscular dystrophy, congenital myopathy, Charcot Marie Tooth Disorder (CMT) and Spinal Muscular Atrophy. Led by Dr. Ramos-Platt and coordinated by Arlene Deseo, RN, the center serves a largely urban population of 200 muscular dystrophy patients, 100 of whom are living with Duchenne and many for whom English is not their first language. While the program is just beginning to participate in clinical trials, CHLA has worked closely with other institutions as a patient referral provider for trials underway elsewhere.
As a pediatric institution, CHLA provides comprehensive Duchenne care for patients until they reach 21 years of age. The program then oversees the transition of its patients to local adult care programs, such as the Center for Duchenne Muscular Dystrophy at the David Geffen School of Medicine. CHLA proudly boasts a 100 percent show rate – meaning every patient who schedules an appointment keeps that appointment – a statistic that speaks to the demand and capability of CHLA to meet the needs of the unique Duchenne patient population.
“The team at Children’s Hospital Los Angeles is the perfect illustration of one of the reasons PPMD launched this program,” says Kathi Kinnett, MSN, CNP, PPMD’s Senior Vice President of Clinical Care and co-director of Transforming Duchenne Care Initiative. “They have assembled and trained a team of incredibly talented care professionals who believe strongly in the benefits of optimal care for people with Duchenne.”
Kinnett says PPMD has received numerous requests from centers wanting to be considered for certification since the Certified Duchenne Care Center Program launched in March 2014. “Families have come to rely on our certification as an indication that these clinics are the best of the best,” Kinnett says. “Throughout 2016, we will continue to certify more clinics across the country, recognizing teams of physicians for their leadership in Duchenne care and enabling families to make the best choice for the care of their child.”
Certification Recognition to Come from Patients on May 13
Now 11 years old, Ian moved with his mother to Los Angeles a couple years ago in order to have better access to CHLA’s medical staff, as well as surroundings that can improve his quality of life. Lois says, while her son faces a tough road ahead, she has trust and gratitude for Dr. Ramos-Platt and her team.
“At first [when she called us years ago], I was afraid. It was like receiving bad news from a stranger,” she says. “But now that we know everything about Ian’s condition, I'm so grateful that happened to us. [Being here means] not just having a doctor I trust, but also therapists, to the most basics like good sidewalks to run a wheelchair.”
On Friday, May 13, families representing Parent Project Muscular Dystrophy, including Ian’s, will present CHLA’s Neurology Division with a plaque recognizing CHLA as a Certified Duchenne Care Center. A short ceremony will take place in the Healing Garden beginning at 12:15 p.m., followed by time for media interviews. If you are interested in attending, please RSVP with Owen Lei at olei@chla.usc.edu or 323-361-8433.
About Children’s Hospital Los Angeles
Children's Hospital Los Angeles has been named the best children’s hospital in California and among the top 10 in the nation for clinical excellence with its selection to the prestigious U.S. News & World Report Honor Roll. Children’s Hospital is home to The Saban Research Institute, one of the largest and most productive pediatric research facilities in the United States. Children’s Hospital is also one of America's premier teaching hospitals through its affiliation since 1932 with the Keck School of Medicine of the University of Southern California.
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About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our mission is to end Duchenne.
We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.
Everything we do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.
