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Every dollar raised through Footsteps for Finley enables Cure CMD to find treatments and one day a cure for those living with the life limiting disease, LAMA2 Congenital Muscular Dystrophy.
Thanks in part to Cure CMD, families raising money, donors and partners, we anticipate greater reasearch and are very hopeful for viable treatment options to help indivuduals like our very own Finley.
Finley was born with an ultra-rare genetic disorder called LAMA2 Congenital Muscular Dystrophy, also known as MDC1A, Merosin Deficient or Merosin Negative CMD. This condition is inherited in an autosomal recessive pattern, meaning both Mike and I carry one copy of the mutated gene- which Finley has inherited both.
LAMA2 related muscular dystrophy is caused by mutations in the LAMA2 gene, laminin proteins are found in the extracellular matrix of our skeletal muscles. When we have laminin to bind to other proteins in the extracellular matrix it helps maintain the stability of muscle fibers, of course without this we have weakness and atrophy of muscles used for movement.
Finley has early-onset LAMA2 related muscular dystrophy or LAMA2 Congenital (meaning from birth) Muscular Dystrophy. We, as parents, noticed something was off around the 2nd month of Finley's life, doctors didn't even realize until we brought him in specifically for being "floppy". Finley was diagnosed with hypotonia (lack of muscle tone) a bit before 3 months of age, which then made us go further with our search of why.
LAMA2 CMD can presents itself with white matter changes in the brain, severe muscle weakness, Hypotonia, contractures, weakness in the muscles in the face and throat (this did make Finley have difficulty feeding- which then made him diagnosed with failure to thrive at the time), a weak cry and breathing problems (thankfully we didn't have much breathing problems when Finn was a baby but he did have a cute little cry).
Growing with LAMA2 CMD, can be difficult on the body. Many children develop an abnormal, gradually worsening scoliosis, and/or lordosis. Early onset LAMA2 kiddos usually do not learn to walk unassisted. Speech problems may result from the weakness in the facial muscles and tongue, but intelligence is usually normal. Heart problems and seizures occasionally occur.
Today Finley at 5 years old is smart, dislikes math, but loves history and science (loves anything to do with the military and space). He has a great memory, like for this toy he received when he was two- he can name you everything about it what it looks like and does, who gave it to him, where he was, etc. He doesn't like to slow down but is an amazing driver with his wheelchair. Finley has great manners, and is super outgoing and friendly to everyone! If he isn't playing inside with soldiers or being one, he enjoys marching to music or humming little tunes, bubbles, playing soccer, racing, swinging on the swing, swimming his little heart out, and he can't wait for the snow this winter!! He is determined, and proud of himself, he is goofy and super sweet (like when he knows he isn't doing something right and say "Hey Mom, you look pretty.")
He is Michael's and my best friend and we are so lucky to have him as our son.
About Cure CMD:
Cure CMD’s mission is to advance research for treatments and a cure for the Congenital Muscular Dystrophies. We will improve the lives of those living with CMD through engagement and support of our community.
Cure CMD was founded in 2008 by three parents whose children were affected by Congenital Muscular Dystrophy. Through close collaboration with scientists, doctors, dedicated volunteers, involved families, and generous donors, Cure CMD has achieved significant impact in its first decade as a nonprofit organization:
- Launched two clinical trials
- Completed a five year natural history study with the NIH to identify clinical trial endpoints
- Grew the Congenital Muscle Disease International Registry (CMDIR) to 2,400 registrants worldwide
- Co-Funded over $2 million in research grants
Cure CMD aims to bring five out of five CMD subtypes to clinical trial by 2025. We hope you'll join us in advancing this cause.
About the Boilermaker:
The Boilermaker is dedicated to leading the healthy lifestyle movement through exercise and fun. In 1978, the Boilermaker began as a 15K road race with 876 runners. Today it is a week long extravaganza drawing thousands from all over the world.Held in Utica, New York, the gateway to the Adirondacks, Boilermaker Week kicks off with a community mile and includes a host of other activities for runners, the community, sponsors and volunteers. The Boilermaker events, such as the Planet Fitness Health and Wellness Expo, the Carbone Auto Group 5K Race and the Utica National Kids' Run allow the community to show visitors from all over the world the best of what the area has to offer.If you are an avid runner or someone who wants to meet a new personal fitness goal, the Boilermaker 15K presented by Excellus BlueCross BlueShield is for you. With a challenging, spectator-lined course, the Boilermaker 15K is often referred to as the nation's best 15K—due in part to the Saranac Post-Race Party at the F.X. Matt Brewing Company
We greatly appreciate your time in reading this, spreading the word about our cause, and for your donation to Cure CMD. Look for Finley pulling Michael through the finish line at the 2018 15k Boilermaker in Utica, NY!
With all our love,
The Sanchez Family