Anthony's Story
Hi, my name is Anthony Cancel. I was born on May 15, 2008. I was a healthy baby when I was born and I met all my motor skills developments until my parents noticed I wasn’t walking by the age of 1. I started crawling when I was 6 months and I started cruising around at 9 months. We celebrated my birthday and I had so much fun. At the same time, my mom was expecting a baby girl. At 13 months my parents took me on vacation to Cancun, Mexico where I enjoyed the water so much. On July, after we came back from vacation, my great-grandma notice that I wasn’t cruising around anymore and I cried every time my parents made me stand up. By the end of July my mom noticed that I stopped crawling and that I was weakening. So, my parents decided to take me to the emergency room where I was seen by a neurologist. My parents had no idea the shocking news they were going to receive. The first day at the hospital, the doctors started doing test, but they did not know what it was. It wasn’t until the next morning that the doctor order an EMG and the results came back with Spinal Muscular Atrophy, so the doctor ordered a DNA test to confirm it. Spinal Muscular Atrophy is a genetic neuromuscular disease which affects the muscles on your body. This has been a shock to my parents because the Neurologist told us that this is a genetic disease where both parents must possess this bad gene in order to pass this disease to their children. Fortunately, my 3 month old sister does not have SMA.
This is more precise information found on the internet:
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common “rare disorder”: approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body – i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. Intellectual activity is normal and it is often observed that patients with SMA are unusually bright and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones.
Message from Parents
Anthony has never walked, therefore his muscles are weak. However, he is now receiving physical therapy to strengthen his muscles and to avoid any more weakness, but this disease progresses slowly. There is no cure for SMA at this time or treatment in the US. There is hope, however, on a treatment that is being done using stem cells. The Dr. performing the treatment is from Argentina and his name is Roberto Fernandez Vina. We have to raise money to get this treatment for Anthony since no insurance will cover this treatment out of the country. The treatment cost is $18,000 plus travel expenses. Dr. Fernandez has already treated a little girl with positive results and the little girl is now walking on her own, something she was never able to do.
The treatment done by Dr. Fernandez Vina is done by using stem cells from the patient that are extracted from the patient’s bone marrow. The stem cells are then sent to the lab and are injected through IV to the patient. The results are usually seen between 2-4 months.
My parents have an account set up for any donations at Chase Bank under Anthony Cancel Benefit Fund. Any contribution is greatly appreciated.
To make a donation please click here.
or attend my
Fundraiser
March 6th
View a video of Anthony at Physical Therapy.
Informational Flyer.