How far will one go to advocate? As a pediatric orthotist who works at Shriners Hospitals for Children in Tampa, Fla., I am aware of the daily challenges families face when caring for a loved one with needs. There are no limits when it comes to my own child, who is battling a progressive disease.
Raising awareness for mitochondrial disease and for the challenges that children with special needs face is one of my priorities. My oldest son, Giovanni, age 9 years, and I arrived in Washington, D.C., on June 16 for a weeklong trip. We were both enthusiastic advocates for my youngest son, Gianluca, age 4 years, who faces a mountain of medical obstacles with such a devastating diagnosis.
Mitochondrial diseases result from failures of the mitochondria. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, the amount of energy generated within the cell continues to decrease. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children and is often life-threatening and life-shortening. Symptoms may include loss of motor control, muscle weakness and pain, gastrointestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility.
This trip was a great success for us on Capitol Hill, as was presenting to congressmen and senators of Florida on July 18. We captured their attention and opened the eyes of the legislators as I spoke about the effects of mitochondrial disease and how it has affected me as an orthotist.
Caring for my son’s daily needs is a full-time job for both my wife and me. Mitochondrial disease has affected my son in many life-changing ways. He is dependent on a feeding tube for daily nutrients and requires a regiment of medications that are pushed through his tube routinely. Gianluca’s childhood is being robbed from him by a disease that requires monthly hospital admissions, where he receives intravenous (IV) immunoglobulin infusions during the course of a few days. This will only help build his immune system so he can fight off secondary illnesses. No child’s bedroom should look like a hospital room, but it is hard to avoid when you have medical supplies, oxygen tanks, IV pools and a blood pressure machine — just a few items that line the walls of my son’s room.
Orthotist Dino Scanio recently visited Washington, D.C. to talk to legislators about the challenges of raising a child with mitochondrial disease. Shown is his son, Gianluca, who has the disease.
Source: Scanio D.
No greater harm can be done to me than to come home and see my son fighting a disease that threatens his life. Gianluca currently uses high-profile solid ankle-foot orthoses and will most likely require knee-ankle-foot orthoses as the disease advances and he gets weaker. It is already difficult enough casting your own son for braces, but knowing it will not fix the problem leaves me hollow. It will only get worse and will be harder to maintain successful bracing.
Giovanni stood proudly next to me as he held a poster board with pictures of his brother and answered questions that were asked by legislators after I explained how this disease has forever changed us as a family. We were only a few of the representatives from the state of Florida.
Trips like this one to Washington help restore hope for research, education and advancements in treatments. It is also a wonderful way to keep parents motivated and engaged in the fight to find a cure. On June 18, the color green was worn, as it represents mitochondrial disease, and was noticed throughout Capitol Hill as hundreds of us from around the country joined in the fight to raise awareness.
Rising awareness about struggling families with special needs children, the ongoing insurance obstacles, the need for more education, advancements in research and better treatments can only help lead to finding a cure. I hope that trips like this one, which built lifelong memories for us, will continue to be effective and help change the minds and the hearts of all who can make a difference. — by Dino M. Scanio, CO, LO
For more information: Dino M. Scanio, CO, LO, director of the nonprofit FOOT Foundation, can be reached through www.footfoundation.org.