2019: Aryiana Marcel
Ariyana Marcel has Spinal Muscular Atrophy
From nominator, April Catarella
Ariyana Marcel
Age: 16
Diagnosis – Spinal Muscular Atrophy – Type 3
Family Info: Mom – Marylynne Marcel Dad – Dillon Marcel Brother – T.J. (younger)
Live in Bush, LA (St. Tammany Parish) where she attends Covington High School
Ariyana is one of the first children I met when joining MDA in 2010 – when she was only 8 years old. At that time, she was still walking, with the assistance of braces. Over the next 7 years her muscular dystrophy slowly took away her ability to walk but that did not stop her from remaining positive and active. She has been attending camp for the past 8 years and 2019 will be her final year as she will graduate at 17. As her disease progressed she lost more abilities including being able to raise her arms. She was forced to stop doing some of the things she loved including horseback riding and acting as a cheerleader for her junior high football team. After she started coming to camp Ariyana and her family became more involved with MDA, serving as local and state ambassadors, participating in the Muscle Walk fundraiser with Team Ariyana’s Army and filming a PSA with former New Orleans Saints running back Reggie Bush for national use. When a treatment for SMA was announced Ariyana was one of the first to qualify in Louisiana and began receiving injections in 2017. While the drugs are promising the treatment is done through the spine so it is not easy on the body. As she received each injection she has slowly began to regain strength and abilities. In December 2017 she was able to lift her arms again and was interviewed by FOX for a local story - Fox News Story on holiday tree decorating - http://www.fox8live.com/story/36971747/girl-fightingdebilitating-disease-sees-improvement-ahead-of-holiday-season/ After meeting her the reporter “fell in love” and decided to follow Ariyana on her journey, doing more stories since then. Here is the most in-depth story. Fox News Story on her treatment -http://www.fox8live.com/story/37604776/groundbreakingtreatment-giving-md-patients-new-strength/ Ariyana has always been an artist and since regaining strength in her arms she is always drawing, painting and creating different crafts. She still enjoys going to see her high school football team play on Friday nights (Covington High School) and takes road trips with her mom and brother whenever they can. Dillon, her father, works off-shore so he is away for long periods of time (2-4 weeks) before getting to return home and spend a week with family. They live in the country in Bush, LA and are a very outdoorsy family. Mom and Dad are avid motorcyclists and Mom is always taking them to see the horses at their neighbor’s farm. At camp Ariyana is not like most of the other girls… while they are in the pool for swim time you can find her out at the pond fishing. This year she caught more fish than any other campers – including George!!! After her 7th treatment she has progressed so far that she lifted her legs on her own for the first time in years. Her mom shared the moment with us while in tears. Since then she has gotten a special adaptable bicycle that allows her to bike alongside her friends and brother. She still does not have enough strength to support herself walking but hope is on the horizon for her. Ariyana’s story is much like George and Rachel – despite the setbacks of her diagnosis her family has remained positive. There have been tough times of course. I remember right after I came back this year her mom contacted us upset because Ariyana was upset. Her best friend had just gotten her license and she realized that driving is something she will probably never be able to do. It was one of the first times her mom has ever seen her that upset. To cheer her up her camp counselor picked her up and took her out for a “girls day” going shopping and to the movies. It was such a sweet story. I’ve always shared Swollfest with then because I know how much Ariyana loves fishing. I know she would love the chance to go deep sea fishing. I’m not sure if she is a hunter but something tells me it would be right up her alley. This family and Ariyana’s progress is one of the reasons I went back to MDA. I stayed in touch with them over the three years I was gone and felt pride knowing that work I did may have contributed to the eventual uncovering of the treatment for SMA. I think her and her mom would be a great story to share at Swollfest and obviously I am biased 😊 Here are a few photos of her over the years Reggie Bush PSA Shoot – this was the first time I met her, so little!