My wife and I, Sheree, married in April of 2004. I was married once before and had a precious baby named Courtney Paige Bonsett. She had Down syndrome and passed away in 2000 at the age of eight from complications of the flu. Her personal website is www.courtneybonsett.com. I was devastated but she was a blessing and had a profound and positive impact upon my life.
After trying for four years and having one miscarriage, Sheree finally got pregnant. We had visited a fertility clinic where doctors told us our chances of getting pregnant again were slim. In September of 2008 we were ready to try in-vitro fertilization, but instead of making an in-vitro appointment, we were told to make an appointment with an OB! We were pregnant with Ryan! We were thrilled with the news, but our joy was short-lived. Sheree started having issues after a couple of months and was ordered on bed rest. At 28 weeks, it was determined the pregnancy was not going well, and with her life in danger, and that of Ryan’s, we were admitted into the hospital. Sheree was sent to the ICU and with all other options exhausted, we were told it was time for our baby to come into this world. On February 17, 2009, Ryan Cooper Bonsett was born at Plantation General Hospital. He was 11 weeks premature and weighed in at just 2 pounds, 12 ounces. Ryan was in the NICU for 48 days and it was quite a roller coaster ride. Every day that we thought he would go home there was another setback with more complications. Finally, after 48 days, Ryan was allowed to come home with us. Since Ryan was premature, there were constant concerns about his health. We had appointments with various pediatric specialists that finally gave us a “clean bill of health.” We were referred to a physiologist and she determined that Ryan had Torticollis, a neck condition that required physical therapy to improve his condition.
However, we soon noticed that Ryan was not moving his legs and had weak muscle tone. We hoped it was a result of his prematurity and that he would outgrow it with therapy. However, Ryan was not improving with therapy and we were then referred to a pediatric neurologist. After that evaluation, the doctor suspected Spinal Muscular Atrophy (SMA). He ordered a blood test to confirm or rule out the SMA and after two agonizing weeks, our worst fears were confirmed. Ryan was diagnosed with Type I SMA. The neurologist told us to contact pediatric hospice because Ryan’s end was near and we should just enjoy whatever time we had left with him. This was not a diagnosis that any parent wanted to hear; especially one that already had already lost a child.
We immediately began doing research, with the help of our families, to learn everything we could that would possibly help our baby. He is our world and we want to do everything possible to help him live longer than the statistics say he should, which is, sadly, less than two years. So this is how the Ryan Cooper Foundation came to be. We know we can find a cure; it is just a matter of time, money and research.
Ryan is now 2 years old and doing well considering the bleak outlook we received from the Doctors. We are using the NIV protocol and Ryan gets 3 respiratory treatments a day. Ryan uses his Trilogy vent while taking naps and when he sleeps at night.
There is hope; hope that a cure is found that will not only help Ryan, but all the other families out there affected by this horrible disease. The hope is in the research privately funded by individuals and companies like you. The Ryan Cooper Foundation was set up to help accelerate these funding efforts because Ryan’s time is limited. We need to find a cure NOW. Please help us and all those other parents find a cure. Would you please donate today?
Hope is NOT a strategy. “The question clearly and powerfully before us is not what we hope for, but rather, what are we going to do to make our hopes actually happen. We need to act. Now.” (Jake Brewer)
Sam, Sheree and Ryan