Gianni Strong was created to raise awareness of Spinal Muscular Atrophy (SMA)— a disease we had never even heard of, let alone knew we were both carriers of, until our son’s diagnosis. It is hard to put into words what it is like to be told your child has a degenerative neuromuscular disease. Devastation and desperation sparked a fire to do anything and everything we could to give our child the life he deserves and to cure SMA. We formed Gianni Strong, Inc in support of our hero- to show him that he will always have an army behind him and will never face this fight alone.
Our mission is to raise awareness of Spinal Muscular Atrophy and to help fund research and clinical trials. Gianni is blessed to receive Spinraza- a life saving treatment, because of the families who came before us raising awareness and funds, as well as the incredible doctors and scientists who have dedicated their lives to curing this disease. All money raised will be donated to Cure SMA, The Research Institute at Nationwide Children’s Hospital and Ohio State’s lab for SMA research and clinical trials. We are so thankful for the wonderful care Gianni is receiving at NCH and the invaluable support we receive from our Cure SMA community.
As Helen Keller once said, “Alone we can do so little; together we can do so much.” Thank you all for your love and support…it truly means the world to our family. Together we can #curesma!
Gianni's Story
Spinal Muscular Atrophy is a vicious, unforgiving disease that, if left untreated, will eventually affect every muscle in a person’s body. Our sweet boy, Gianni Matthew was diagnosed with Spinal Muscular Atrophy (type III) just two days after his 3rd birthday. At diagnosis, Gianni had severe constipation and visible tremors, especially in his hands. He was constantly tripping and falling. He was unable to climb stairs or jump and had no reflex response.
Gianni began treatment in September of 2018, shortly after his diagnosis. Spinraza (the first SMA drug, FDA approved in 2016) has helped to slow disease progression in our boy and there are more treatments on the horizon. There is now hope for families affected by this devastating disease, that has historically been the #1 genetic cause of death in infants. We are so grateful to live in a time with such extraordinary scientific breakthroughs!
Thanks to Spinraza and weekly physical therapy, Gianni has made significant increases on the Hammersmith (a physical therapy assessment given to evaluate his progress after treatments) and he has gained the ability to JUMP! This is HUGE...children with SMA typically never have the ability to jump.
We are so thankful for this miraculous drug and what it has given our family. But it is not a cure, it’s a treatment that requires spinal injections every 4 months for life. Gianni still falls a lot and struggles to climb stairs independently. He still has no reflex response. We can see Spinraza wearing off halfway through the treatment cycle, as Gianni’s tremors return and his legs give out with more frequent falls. Every day this disease is waging war on our baby’s little body and every day we will continue to fight for a cure.
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Life Lately
We would like to give you all a little update on Super G. Thanks to our miracle “muscle juice” Gianni is thriving! He has received 23 Spinraza injections (and counting)… we know that this amazing drug is the reason that Gianni is still walking and able to live his best life. We are beyond grateful for that, but it is an invasive treatment and our brave boy goes through a lot. Because of this, we will always fight for a cure. While we are confident that Gianni is receiving the best care at Nationwide Children’s, we continue to seek second opinions from top SMA hospitals around the country as many new drugs are in clinical trial and combination therapies may be an option in the near future.
Gianni has never let SMA stop him. His courage and tenacity continue to inspire us. Of course there are roadblocks on this journey, but Gianni finds a way around them (or we help him knock them down). He is beyond blessed to have the tremendous love and support of his big brother. Vito travels this road with us and is always there to pick Gianni up when he is down.
In the last few years, we have relocated to a more accessible school district. The move has been a blessing for our family and we are surrounded by an incredible community. Gianni loves his new school and is currently rocking the 3rd grade. We became members of St. Edward, where he made his First Holy Communion last spring. Gianni has made many wonderful friends through school and his love of sports. He is the best hype man/ water boy/ team manager and is always on the sidelines cheering Vito and his teammates on. We are so grateful to the Southwest Licking community for embracing our boy and making this place feel like home.
While he has always been passionate about (playing and watching) “the big 3”— football, basketball and baseball, Gianni has recognized that playing basketball is especially hard for him with the amount of running up and down the court. He chose not to play this year, and has decided that he wants to learn to play golf instead. We found a wonderful golf instructor and G is really enjoying his lessons. He is especially excited for this year’s Scramble and using his new clubs on the First Tee :)
Though some things change, some remain the same— if you know Gianni, you know he is obsessed with the Kansas City Chiefs and the Golden State Warriors! He is also still a huge WWE fan.
Gianni’s competitive nature in sports perfectly compliments his “never give up” attitude and outlook on life. His brave heart and warrior spirit lead us to truly live life to the fullest, while fighting to cure Spinal Muscular Atrophy. Thank you for joining us in our fight!
With love and gratitude— The Bracone Family
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ABOUT SMA
SMA is an autosomal recessive genetic disorder affecting the part of the nervous system that controls voluntary muscle movement. The disease is characterized by progressive breakdown and loss of the nerve cells, called anterior horn cells, in the spinal cord. The spinal cord is responsible for sending messages from the brain to other parts of the body. As the nerve cells breakdown, the brain is no longer able to send messages to the muscles telling them to move causing the muscles to become weak and atrophied. At first, the muscle weakness is most noticeable in the legs, but as time goes by the weakness may spread into the arms, trunk and neck.
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SMA is an inherited condition that occurs in approximately 1 in 10,000 people. It is estimated that one out of every 40 to 50 people in the general population is a carrier of SMA. A carrier is a person who has one functional copy of the SMN1 (Survival Motor Neuron) gene and one non-functional copy of the gene. Generally, a carrier has no symptoms of muscle weakness because the normal gene compensates for the non-functional gene. A carrier has a 50% chance of passing the non-functional copy of the gene to his/her children. A couple is at increased risk of having a child with SMA when both parents either have SMA or are carriers of the condition. If each parent is a carrier of SMA, there is a 25% chance to have a child who is unaffected and is not a carrier, a 50% chance to have a child who is a carrier, and a 25% chance to have a child with SMA. Approximately 95% of people who have a clinical diagnosis of SMA will be missing both copies of the SMN1 gene due to gene deletion. This was the case with Gianni.
Thank You -
Thanks to your generosity, we have been able to donate more than $30,000 to Spinal Muscular Atrophy Research in honor of our warrior. Since Gianni’s diagnosis we have been surrounded with love and support from our family and friends! Between the Super G, our T-shirt fundraisers, Cure SMA Walk-n-Rolls and donations made to Cure SMA in honor of G… your support has helped advance SMA awareness and disease research. This means the world to our family and makes a difference in the lives of all people affected by Spinal Muscular Atrophy.
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