Our seven-year-old son, John-Paul Charbonneau, has been greatly debilitated by chronic seizures, which began when he was an infant. After many hospitalizations and ER visits--too many to count--and after no medical intervention made much difference for John-Paul, we found a number of therapies that have allowed him to smile, sleep through the night, to move with some purpose, and to begin to develop. In fact, with his current therapy regime he has not been hospitalized for three years. As he grows, however, his continued progress will require machines and training that we cannot afford. With them, we would expect to see John-Paul continue to improve, have still fewer seizures, and to someday learn to walk. It would be a long process, so he would be able to use these machines for many years to come. What we can provide for him now, will greatly impact his future health.
Please consider helping us to continue to alleviate John-Paul's ongoing suffering by donating to our fund to acquire the recommended equipment and training for him. The first machine is called a Quadriciser. It is a device that has helped many disabled with their mobility problems, and ultimately would help him to walk. The second, a Hyperbaric Chamber, would reduce his seizures and improve his overall health. We also wish to return to the Family Hope Center in Philadelphia where we have learned many of these therapies and diet changes that have helped John-Paul.
For a more detailed description of why we need these machines, please read about our son's history and condition:
John-Paul, despite having a long and trying labor and delivery, was born a normal, healthy child. He was very strong and developing well. When he was three months old, his growth pattern changed when he had his initial seizure, the first of seemingly endless ones to come. During his third grand mal seizure, he stopped breathing and had to be rushed to the hospital in an ambulance. (We had no idea that this panic-inducing and heart-wrenching scenario was to become a routine for him and for our family for the next four years.) The doctors and nurses frantically tried to stop the seizure. Since he wasn't breathing he had to be intubated -- hooked up to a ventilator. It was hard to believe that such a little person could be so covered with wires and tubes. His neurologists tried many different types of medicines over the next few months, but John-Paul got progressively worse. Our lives began to revolve around looking for ways to stop the seizures, as his condition had developed to the point where they stopped his breathing regularly. Every single night he had seizures, and we would be up a dozen times with him. At JP's worst, we were in the emergency room two to three times a week. After 14 ambulance rides we stopped counting, and by the time he was a year old he had been admitted to the ICU 30 times. We never knew if we were going to lose him to a seizure, and the doctors didn't know either.
Desperate to find someone who could help, we took John-Paul to four pediatric neurologists by the time he was one; none knew what to do for him, nor could any determine what was wrong with him. He has had nearly every test available -- complete MRI and CAT scans, metabolic and genetic testing, EEGs, EKGs "“ all with no results to explain his condition. The specialists' recommendations were limited to increasing or changing his medications, but our son only became more ill.
When John-Paul's last pediatric neurologist told us that our guess was as good as hers as to what to do with him, we knew that we had to take responsibility for finding a treatment that would finally help him. Through the miraculous help of many generous people we indeed have found many ways to benefit and better support John-Paul. One is a center in Philadelphia that concentrates on helping parents take care of their special-needs children. There we were given a customized program of intensive therapies that significantly reduced the seizures. Later, we learned that his diet had a substantial impact on his health. After much research and trial, we have found a nutrition regimen that has made considerable strides in healing him.
Through these and many other natural methods, such as cranio-sacral and chiropractic therapies, John-Paul has been healed enough so that he has not been in the hospital for three years. Getting him to this point has been slow and painstaking, but now that he is here, we believe that he has never been at a better place to reach his full potential through his therapies.
Unfortunately, not one of the effective therapies that have made such a difference in John-Paul's healing and development is covered by our medical insurance. We have done all that we can with the limited resources that we have, but there is so much more that could be done for him if we had more resources from which to draw. Frankly, we could even use financial help for the things that we do for him now.
We are writing to you, in all humility, to advocate for our son. We ask, first and foremost, for your prayers. Without them we would have run out of strength to persevere a long time ago. Secondly, we ask for you to consider financially assisting us so that we can provide a better quality of life for John-Paul and ease his suffering by way of these therapy machines. Words cannot express how grateful we are for your generous friendship, prayers and monetary help.
May God bless you for helping John-Paul!
Nic and Jaime Charbonneau
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