When Charley Seckler was 3 years old, everyone seemed to notice his big, strong calves. People always said, Charley, youre gonna be a soccer player, his mom, Tracy Seckler, tells PEOPLE.
But when Charleys pediatrician said he might have muscular dystrophy, Tracy began to connect the dots. The concerned mother went online and saw videos of other kids who had her sons same big calves, and they were all using their hands to push themselves off the floor just like her son did. She knew instantly that Charley hadDuchenne muscular dystrophy (DMD).
Duchenne is a rare, progressive, degenerative disease affecting about 1 in 3,500 boys, according to the Muscular Dystrophy Association (MDA). Children with the condition are born without the protein, dystrophin, which results in muscle degeneration. Eventually, they cant walk, feed themselves or breathe on their own. One of the symptoms is enlarged calf muscles because the muscle tissue is abnormal and may contain scar tissue, according to the MDA. Until recently, boys with DMD usually didnt survive beyond their teen years. Life expectancy is increasing and survival into the early 30s is becoming more common.
Tracy and Charley SecklerCourtesy Tracy SecklerAt the time Charley was diagnosed, Tracy who was pregnant with Charleys sister, Maisy, and also mom to Charleys 5-year-old brother, Sam quit her job as a middle school teacher so she could take Charley to doctor appointments in Boston, New York and Washington, D.C.
We thought for sure wed find someone who could help him, says Tracy, 47, of Alford, Massachusetts. You just dont want to hear: Theres nothing we can do.
But all doctors could do was prescribe her son steroids. There was no treatment. There was no cure.
Tracy and her husband, radiologist Dr. Benjy Seckler, were determined to change that. Four months after Charleys diagnosis, they created Charleys Fund to try to save their son.
Charley SecklerCourtesy Tracy SecklerThey spoke to researchers, doctors and scientists and read research papers related to Duchenne. Their first fundraiser, a jewelry auction, raised $60,000. They now sell custom jewelry and ties and even temporary tattoos on their website. They also have a letter writing campaign, an annual scavenger hunt in Central Park and they receive donations from kids lemonade stands.
Over the years, they have directed more than $40 million towards Duchenne research.They even rallied families of kids with Duchenne and co-founded a biotech company that is developing three new drugs.
She really got everybody riveted and to be one voice and to fight for our kids lives, says Kristen Greco, 43 of Neptune, New Jersey, whose 9-year-old son, Luke, has Duchenne.She was really a guiding force. Not just for myself, but the entire Duchenne community.
Kristen Greco and her son, LukeCourtesy Kristen GrecoTracy and her husband have given TED talks and petitioned, lobbied and testified in front of the FDA about new drugs.
Shes quite a visionary, says Duchenne expert Dr. Brenda Wong, Professor of Pediatrics and Neurology and Director, Comprehensive Neuromuscular Center/MDA Clinic at Cincinnati Childrens Hospital Medical Center.Theyve come a long way. She is brilliant. She is really able to be very objective when it comes to analyzing problems and assessing the need.
Last September, a new drug that produces the protein missing in Duchenne patients received FDA approved.
They have really, really put the pressure on therapeutics for Duchennes, says Dr. Louis Kunkle, Professor of Genetics and Pediatrics at Boston Childrens Hospital and Harvard Medical School, who discovered the protein that causes Duchennes in 1987. Its fantastic. Its pushed the field forward.
The FDA-approved drug is tailored to the most common form of Duchenne, and sadly, isnt the kind Charley has. But, there are at least six drugs in human trials, Kunkle says, and more coming.
Its a devastating disorder, Kunkle says. But there is hope on the horizon.
Charley, now 16, is far shorter than his siblings hes 4-foot-2 because the steroids he has taken for 13 years have stunted his growth. Hes the size of a fourth grader, says Tracy. Waitresses give him a kiddie menu and a plastic cup with Mickey Mouse on it.
The Seckler familyCourtesy Tracy SecklerCharley spent the summer working at a coffee shop. He has a map of the world in his room and loves to travel. Hes been everywhere from Tanzania to Paris. He loves sushi, Frank Sinatra and cant stop staring at his new Daniel Wellington watch. A self-proclaimed foodie, he says reading restaurant reviews is his favorite activity.
Charley skied with his family until he was 8 and he had to stop. He can still walk, but they just bought him his first manual wheelchair this summer for when theyre in airports or big cities. Charley was participating in a clinical trial, but it was suspended. Tracy hopes it will restart soon.
Its literally heartbreaking to know that you have to keep waiting especially when every day there is deterioration, Tracy says. Its hard. But theres no way I can give up now.
Shes recently convinced a group of non-profits to fund a clinical trial and is currently planning a global research meeting in Paris.
Shes always busy, Charley says. Im proud of her. Shes always working.
Because she wants to keep him alive.
I want to push as hard as I can, she says. When we first started, I thought to myself, If there could have been a treatment, there woulda been a treatment. But thats not always true. Sometimes you need to ask questions until there are no more questions to ask.
More:
Mom Starts Fund to Find Cure for Duchenne Muscular Dystrophy ... - PEOPLE.com
- Muscular .Dystrophy -Successful-treatment by acupressure , Ayurveda, Yoga - May 10th, 2011 [May 10th, 2011]
- Muscular Dystrophy Treatment - Todd Harrison Improving Balance - May 16th, 2011 [May 16th, 2011]
- Oculopharyngeal Muscular Dystrophy (OPMD): Exploring Causes and Treatment - May 20th, 2011 [May 20th, 2011]
- Muscular Dystrophy Treatment - Todd Harrison holding body weight - May 21st, 2011 [May 21st, 2011]
- David G VECTTOR Muscular Dystrophy Treatment double arm strength month 6 - May 22nd, 2011 [May 22nd, 2011]
- David Gould Becker Muscular Dystrophy VECTTOR Treatment - June 2nd, 2011 [June 2nd, 2011]
- Muscular Dystrophy Halo - June 3rd, 2011 [June 3rd, 2011]
- Muscular Dystrophy VECTTOR Treatment Documentary - Todd's 6 Month Journey - June 7th, 2011 [June 7th, 2011]
- Muscular Dystrophy Treatment Results - David Gould - New Footage - June 8th, 2011 [June 8th, 2011]
- Muscular Dystrophy - Rewriting History with VECTTOR - June 10th, 2011 [June 10th, 2011]
- Muscular Dystrophy - David Gould 5 month VECTTOR treatment for BMD - June 12th, 2011 [June 12th, 2011]
- Duchenne's Muscular Dystrophy Stem Cell Treatment - Reelabs India - June 14th, 2011 [June 14th, 2011]
- Muscular Dystrophy VECTTOR Treatment - Todd Harrison/Luau Presentation - June 16th, 2011 [June 16th, 2011]
- Dr. William Rader - Muscular Dystrophy Breakthrough - June 16th, 2011 [June 16th, 2011]
- Muscular Dystrophy patient at Xcell-center - Nabeel Mohamed Abdulhusain, 46 years - June 17th, 2011 [June 17th, 2011]
- Charlie's Story: Duchenne Muscular Dystrophy Part 4 - July 18th, 2011 [July 18th, 2011]
- Muscular Dystrophy VECTTOR Treatment - David Gould/Luau Presentation - July 19th, 2011 [July 19th, 2011]
- Testimonial 4 of Muscular Dystrophy after Stem Cell Therapy - August 5th, 2011 [August 5th, 2011]
- Drug Combo Dynamic in Muscular Dystrophy - August 9th, 2011 [August 9th, 2011]
- Testimonial for Fetal Stem Cell Treatment of Duchenne Muscular Dystrophy - August 25th, 2011 [August 25th, 2011]
- Improvement seen in Duchenne Muscular Dystrophy after Stem Cell Therapy - September 11th, 2011 [September 11th, 2011]
- Muscular Dystrophy STS/VECTTOR treatment results - September 24th, 2011 [September 24th, 2011]
- Muscular Dystrophy VECTTOR Treatment Documentary - Todd's One Year Journey - October 2nd, 2011 [October 2nd, 2011]
- Muscular Dystrophy Treatment Day 18 - Todd Harrison's Improvement - October 2nd, 2011 [October 2nd, 2011]
- Wang Yisheng - Muscular Dystrophy Adult Stem Cell Patient - October 9th, 2011 [October 9th, 2011]
- Becker Muscular Dystrophy Miracle TREATMENT - October 11th, 2011 [October 11th, 2011]
- Muscular dystrophy patient_Kleber_Brazil.wmv - October 12th, 2011 [October 12th, 2011]
- Testimonial 1 of Muscular Dystrophy after Stem Cell Therapy - Video - October 18th, 2011 [October 18th, 2011]
- Becker Muscular Dystrophy STS Treatment - Video - October 18th, 2011 [October 18th, 2011]
- Potential Stem Cell treatment of Duchenne Muscular Dystrophy - Video - October 21st, 2011 [October 21st, 2011]
- Muscular Dystrophy treated by Dr Rajesh Shah at Life Force - Video - October 22nd, 2011 [October 22nd, 2011]
- Defying Muscular Dystrophy - I Made It - Video - October 23rd, 2011 [October 23rd, 2011]
- Becker Muscular Dystrophy AMAZING treatment results - Video - October 27th, 2011 [October 27th, 2011]
- First targeted treatment success for Duchenne muscular dystrophy - Video - November 6th, 2011 [November 6th, 2011]
- 125 Days of VECTTOR Treatment Progress - November 18th, 2011 [November 18th, 2011]
- Becker Muscular Dystrophy WALKING ABILITY IMPROVED - Video - November 25th, 2011 [November 25th, 2011]
- PT Muscular Dystrophy Treatment Results - Video - December 5th, 2011 [December 5th, 2011]
- Duchenne Muscular Dystrophy Treated by Cellmedicine - Video - January 8th, 2012 [January 8th, 2012]
- muscular DYSTROPHY treatment IN HOMEOPATH.mp4 - Video - January 28th, 2012 [January 28th, 2012]
- Giulio's strategy is to cure dystrophy with stem cell treatment - Video - January 31st, 2012 [January 31st, 2012]
- Parent Project Muscular Dystrophy is a Featured Nonprofit Selected by Webkinz(TM) Foundation - February 1st, 2012 [February 1st, 2012]
- MDA Awards More Than $12 Million in Grants to Advance Neuromuscular Disease Research - February 1st, 2012 [February 1st, 2012]
- "For treatment we will have in the future" - Video - February 2nd, 2012 [February 2nd, 2012]
- Renowned Pediatric Cardiology Physician-Scientist Linda Cripe Joins Nationwide Children's Hospital - February 3rd, 2012 [February 3rd, 2012]
- JumpStart Invests $250,000 in Milo Biotechnology - February 14th, 2012 [February 14th, 2012]
- When nerve meets muscle, biglycan seals the deal - February 14th, 2012 [February 14th, 2012]
- Medical clinics offer help for Big Island children - February 16th, 2012 [February 16th, 2012]
- Dateline Long Beach: The Aquatic Center brings swim therapy to disabled - February 19th, 2012 [February 19th, 2012]
- Parent Project Muscular Dystrophy Awards $500,000 to Tivorsan Pharmaceuticals - February 21st, 2012 [February 21st, 2012]
- Cure Duchenne Announces Three New Funded Research Projects to Help Develop Treatments and Find a Cure for Duchenne ... - February 21st, 2012 [February 21st, 2012]
- Ligand Licenses DARA Program to Retrophin - February 21st, 2012 [February 21st, 2012]
- AVI BioPharma Regains NASDAQ Compliance - February 23rd, 2012 [February 23rd, 2012]
- Scientists create potent molecules aimed at treating muscular dystrophy - February 23rd, 2012 [February 23rd, 2012]
- AVI BioPharma Announces Fourth Quarter and Full Year 2011 Financial Results and Corporate Update Conference Call - February 23rd, 2012 [February 23rd, 2012]
- Pembroke's Christine McSherry is an 'Inspirational Woman' - February 25th, 2012 [February 25th, 2012]
- The Rare Clinical Diseases Research Network - February 25th, 2012 [February 25th, 2012]
- A Solution for Duchenne Muscular Dystrophy? - Research Summary - February 28th, 2012 [February 28th, 2012]
- A Solution for Duchenne Muscular Dystrophy? -- In Depth Doctor's Interview - February 28th, 2012 [February 28th, 2012]
- Antisense oligonucleotides make sense in myotonic dystrophy - February 28th, 2012 [February 28th, 2012]
- A life of dependence - February 29th, 2012 [February 29th, 2012]
- Nationwide Children's Hospital neuromuscular disorder podcasts now available on iTunes - March 2nd, 2012 [March 2nd, 2012]
- Next-generation DNA sequencing to improve diagnosis for muscular dystrophy - March 6th, 2012 [March 6th, 2012]
- The Dire Limits of Health Care - March 7th, 2012 [March 7th, 2012]
- AVI BioPharma Announces Late-Breaker Oral Presentation of Phase IIb DMD Study at 2012 AAN Annual Meeting in April - March 12th, 2012 [March 12th, 2012]
- Cataracts affect millions of people around the globe, and for many of us they will be a normal part of our aging ... - March 14th, 2012 [March 14th, 2012]
- Your Health: Duchenne's Muscular Dystrophy - March 16th, 2012 [March 16th, 2012]
- Newborn Screening for Duchenne Muscular Dystrophy Shows Promise as an International Model - March 20th, 2012 [March 20th, 2012]
- Newborn screening for DMD shows promise as an international model - March 20th, 2012 [March 20th, 2012]
- Rhenovia launches drug discovery for Huntington's disease - March 20th, 2012 [March 20th, 2012]
- Halo Therapeutics Reports Favorable Independent Review of Lead Drug Candidate HT-100 - March 21st, 2012 [March 21st, 2012]
- Invasive treatment strategy may increase survival for patients with certain neuromuscular disorder - March 28th, 2012 [March 28th, 2012]
- Parent Project Muscular Dystrophy Endorses FAST Act Legislation to Expedite FDA Review of Life-Saving Therapies - March 29th, 2012 [March 29th, 2012]
- AVI BioPharma Announces Conference Call and Webcast on Monday, April 2, 2012, to Discuss Top-Line Data Results From ... - March 31st, 2012 [March 31st, 2012]
- Drug for rare disease may lift AVI BioPharma shares: Barron's - April 2nd, 2012 [April 2nd, 2012]
- AVI BioPharma Announces Eteplirsen Meets Primary Endpoint, Demonstrating a Significant Increase in Dystrophin at 24 ... - April 2nd, 2012 [April 2nd, 2012]
- U.S. Stock Futures Little Changed Before Factory Report - April 2nd, 2012 [April 2nd, 2012]
- Leading experts on congenital muscular dystrophy convene at University of Nevada, Reno - April 20th, 2012 [April 20th, 2012]
- Nature Publishes Work Utilizing N-Gene's Core Technology to Advance the Treatment of Duchenne Muscular Dystrophy - April 20th, 2012 [April 20th, 2012]
- Getting the boots filled - April 29th, 2012 [April 29th, 2012]
- Local business, civic leaders 'arrested' for MDA fundraiser - May 3rd, 2012 [May 3rd, 2012]