CureDuchenne - Together we Can CureDuchenne
April 2013
spacer

Family of the Month - Llauro Family

Jorge and Valerie Llauro and their children Elena and Alexander
Jorge and Valerie Llauro and their children Elena and Alexander.

Empower yourself with knowledge, be involved and live in hope. Those are words of wisdom from Valerie Pappas Llauro of Woodland Hills, Calif., to other Duchenne parents.

“Attitude and action are key,” said Llauro, whose son Alexander was diagnosed with Duchenne at age 5 ½. “Our faith and support network gives us the strength we need every day. This has been the cards we have been dealt and it can either destroy you or build you up. We choose to take control and get involved. We live each day and focus on the present.”

Llauro first noticed Alexander was lagging behind his peers as a toddler. Alexander had a hard time walking long distances, he had trouble pedaling a bike and he wasn’t a climber like other children at the park. His pediatrician said not to worry, he’ll catch up.

“We really started to notice a difference when his younger sister was running circles around him,” said Llauro.

Llauro took Alexander to the pediatrician again thinking that he needed a referral to an orthopedist since he was walking on his toes. The doctor put Alexander and his sister, Elena, on the floor together. Alexander had a hard time getting up and his calves were large.

“It was like going from A to Z all at once,” said Llauro when Alexander was diagnosed with Duchenne. “We went in to the office thinking he might need support in his shoes and instead he needed a blood test and a referral to a neurologist. We were shocked and devastated.”

Right now Alexander is a typical 7-year-old boy. He loves playing basketball and kickball with friends in front of his house. He is a sweet-natured, fun loving boy. Alexander is a happy child who smiles all the time. He wears night splints, his parents do extensive stretching each night and he is swimming with a therapist each week. He knows that all this helps his muscles. Alexander runs different but other than that he is not much different than other children his age.

“I cannot fathom his abilities being comprised. We pray Alexander grows up into a healthy, well-adjusted adult who lives a full life,” said Llauro. “We are hopeful that the progression of the disease is halted so it can at least be managed as a chronic disease.”

Alexander has duplication on exon 2. Llauro has been active fundraising for CureDuchenne’s support of Dr. Kevin Flanigan research project that focus on exon duplication mutations. Dr. Flanigan and his team at Nationwide Children’s Hospital have developed a new mouse model for Duchene that carries a duplication of exon 2. Llauro’s family and friends have raised more than $10,000 to support this project. Alexander is treated at the Center for Duchenne Muscular Dystrophy at UCLA and Llauro also is involved supporting CDMD.

Llauro and her husband, Jorge, are co-chairing this year’s Dealing for Duchenne event in Los Angeles. They are pulling together their film marketing and brand marketing background, respectively, to secure sponsors and auction items. Llauro also tapped into a friend that works at CNN to produce a video for the Center for Duchenne Muscular Dystrophy at UCLA. The Emmy award-winning cameraman and CNN editor are providing their services pro bono. The video will premiere at the event.

“Since Duchenne is a rare disease the funding it not where it needs to be,” said Llauro. “We are using our resources and networks to get the word out. Awareness equals interest and interest leads to funding. Funding leads to action and better treatments and ultimately the cure - and that is what we need to help all our Duchenne boys.”

Powered By Convio