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Domenico's story

A Risky Chance At Life

The following story is excerpted from an article written by David Burstein and published in TV Talk, a Weekly Magazine, Sept. 27, 2003, Pages 1, 22.

 

In these days of daily stress and world unrest, good news shines through as a bright beacon, especially when that good news happens to good people and it serves to renew our faith even when bad times never seem to end. The "MIRACLE" of the recovery and emergence from a rare debilitating illness that could have affected not only the quality of life of a young Domenico, but ever of life itself for him, offers up the power of the strength of prayer, of faith and of determination of his loving parents.

Much has already been written about the medical breakthrough in treating the affliction. Australian neurosurgeons Simon Harvey and Jeffrey Rosenfeld developed a new technique. They have pioneered a new approach to remove the a hard to reach Hypothalamic Hamartoma (HH) tumor. In February of 2003, Professor Jerry Rosenfeld had introduced this surgical technique to a team of surgeons at Barrow Neurological Institute at St. Joseph Hospital and Medical Center in Phoenix, Arizona. At this time, Domenico's family traveled to Phoenix for a consultation with Professor Rosenfeld and the TEAM of doctors at BNI. After the consultation with the team the boy's parents, Dominico and Anna, were told that their son was an acceptable candidate for the surgery and they decided to proceed. In June of 2003, the family returned to Phoenix and on June 5th young Domenico was sent into surgery. The operation, led by Drs. Harold Rekate and Robert Spetzler, took close to six hours to perform and young Domenico seems to have come through it fine. He is considered to be a surgical success and a very sweet boy. 

The doctors who have achieved this were an integral part of the steps that led to the eventual success of the operation on young Domenico. But the love and determination of his parents and their willingness to do whatever was necessary to help their son, is a story of faith and belief and a hope that radiates almost beyond reality into the spiritual.

Put yourself in their place as a parent of a child, who for the last six long years was deteriorating before your eyes. Imagine how you would feel watching for the inevitable seizure to come, which wrecked his body uncontrollably. Imagine through all those years watching, as his illness grew worse. Could you imagine what this did to the parents and their two girls who would watch their brother suffer? Try to run a household and a business, on Broadway, at the same time and always seeming to fail your child. It had to be unbearable. Put yourself in the place of the child, imagine waking up in the arms of your parent in a room that's been torn apart with little or no memory of what just happened. What if your daily activities were suddenly interrupted by firs of rage, uncontrollable seizures and blackouts? Victims of HH have experiences similar to these.

Domenico's family wished to offer their support and knowledge of the steps to take for all others in a similar situation, to fight this evil illness. It is their way of giving back for all the support they received in their quest to save their son's life.

 

UPDATE

 

A brief follow-up on Domenico's story to bring you up to date, 21 months after surgery, and to trace the progress that Domenico has made since the innovative surgery at Barrow Neurological Institute, in Phoenix, Arizona, on June 5th, 2003.

At the age of 14 years old, Domenico is a normal, talkative, social and friendly young man. His rages have subsided, the mood swings are gone. Domenico is in the 7th grade. He participates more in school where overall is doing better. Best of all: Domenico is HH free, seizure free and medication free.

After the surgery, Domenico continued to engage in sports. He has been very active with the Youth Soccer Association and has now reached the point where he can last through an entire soccer game. Domenico has slowly adjusted to the curriculum and studies at school. This is very encouraging as it bodes well for his future. Overall there has been a dramatic change that has transformed a sick worried Domenico and our family into a happy family once again. We are still faced with short term memory BUT we know that this is mostly due and as a result of a prior, more traditional surgery in 2001, at a different center. We are learning to cope with it but are not giving up. Slowly but surely we hope and pray that we will see some more progress. Domenico occasionally gets very emotional, but overall it's a good trade off.

We are very proud of Domenico and looking back at his surgery, we know that it was THE BEST DECISION WE HAVE EVER MADE IN OUR LIVES FOR DOMENICO; WE JUST WISH THIS OPTION WAS AVAILABLE MUCH SOONER!!!

We are still deeply involved with the support group HHUGS which supports all those families with the same afflictions or son went through. It gives valuable assistance to those families that have no where to turn. We find it very rewarding to do these good works. It's a measure of our thanks for the help we once received.

THIS PERSONAL "MIRACLE" STILL REMAINS TODAY AS A GIFT OF GOD.