August 1, 2011

Brady’s Bunch – How one family is turning a painful beginning into an “experience beyond words.”

Despite being only 4 months old, Brady DiMattesa has done a lot for the world. He has helped family members find each other. He has helped friends realize long-known but

"A smile is a light in the window of the soul, indicating that the heart is at home." ~ Unknown

relatively untested bonds. He has helped his parents rediscover the strength of love and the character of conviction while bringing strangers together into a community built on the same. He has also become the peaceful eye in a challenging storm, turning what is a tremendously stressful and daunting experience into what his mother calls “an experience beyond words.”

Brady has done all of this just by being born and living as only an infant can. He didn’t ask for the challenge, he just accepted it, and in doing so has helped others find themselves and each other. He laughs and smiles without having to tell his story of pain and suffering. He has no attachment to it and he lives in the moment. We could learn a lot from young Brady, and it seems that those around him have already learned plenty. They have learned about who they are, the value of human compassion in the face of enormous physical suffering, and the value of love and forgiveness in a time when the mind seems to focus only on the pain.

Here is only a part of Brady’s story.

A Miraculous Conception

Brady’s was a miraculous conception, one that his parents had accepted might never happen and one that occurred in the midst of the soul-searching all struggling human relationships face. One night, in the darkness, Jennifer addressed her fear, frustration and desperation, and the answer came just as unexpectedly as had the tears in the night. Brady was an answer to a lonely prayer on a night when his mother simply had no choice but to face the hopelessness that had become her constant, yet unwanted, companion. After seven years of marriage and countless attempts, it seemed the couple’s dream of having children of their own would never come true.

“I was at wit’s end, I simply was praying for an answer,” said Brady’s proud mom, Jennifer. “We just ended all medical intervention and accepted what was.”

It seemed Jennifer had reached a fork in the journey of life, and the response to her prayer was the news of her pregnancy. After years of medical fertility treatments and the resulting frustration, pain and sadness of those failures, it had come down to one soulful moment of introspection and an act of desperate love. It would be one of many such acts.

On July 18, 2010, Jennifer found out that she was pregnant. With guarded optimism, Jennifer and her husband, Gary, faced what would be a very high-risk pregnancy. She was monitored by doctors constantly during her pregnancy amid test after test. In fear of yet another failed pregnancy, Jennifer refused to name her baby boy, or even look at the nursery. Yet the couple endured. This was their chance to have the family that had eluded them.

World Meet Brady, Brady Meet World

Jennifer and Brady

The miracle that was Brady came into the world on March of 2011 on what Jennifer describes as “the happiest moment of our lives by far”. In a very short period of time the couple had gone from despair and hopelessness to elation and pure joy. Jennifer’s prayers had been answered in the newborn boy who she now held in her arms. What was once nothing but a hopeless dream had now been born, and it was only the beginning.

Immediately after Brady was brought home from the hospital, however, his parents noticed something wasn’t right with him. He would spit up 20 times or more each day. He would have many choking episodes, the scariest of which caused him, according to Jennifer, “to turn blue and stop breathing.”

Jennifer says it wasn’t long before doctors discovered Brady had an aggressive allergy to standard baby formula. Since Jennifer can not breastfeed due to a medical treatment, this caused doctors to switch Brady to EleCare, a specialized and very expensive prescription formula not covered by their family health plan. Unfortunately, this is the only formula Brady can take, says Jennifer, and even though the manufacturer of EleCare, Abbott Pharmaceuticals, has provided some formula, the cost of what is not provided is staggering.

“(Brady) wasn’t gaining weight,” says Jennifer, and since the formula was their only alternative they had no choice but to bear the costs to help their son.

However, this would not end the nightmare for Brady or his parents. Even though the EleCare kept Brady nourished, he would still scream in pain, often contorting his body while displaying strange hand and eye movements. He would projectile vomit, often choking. He would wheeze and sneeze, his parents watching him suffer helplessly while doing all they could to help him. The doctors, again, seemed to be of little help.

“He was always rashy and in a lot of pain,” said Jennifer.

The couple would rush Brady to specialist after specialist but to no avail.

“The specialists were no help. Each time something would happen to him, he appeared better by the time we got him to the doctor. His pediatrician was amazing, but the specialists we took Brady to just could not help the pediatrician put the puzzle together.”

Jennifer also says that an important lesson she learned was that communication with your doctor is a must.

“Sometimes he (the pediatrician) and I would agree to disagree, but he was always willing to hear me out and he did his job,” Jennifer adds. Trust is an important factor in the patient (parent) – doctor relationship, and Brady’s pediatrician had certainly earned hers.

Brady in the Moment

Still, the journey from one specialist to another continued, with Jennifer and Gary trying to find one that would be able to help their son. Jennifer even resorted to videotaping Brady’s attacks to show the specialists, which seemed to be the only way she could communicate and validate what was happening to her infant son. Even with that, there seemed to be little the doctors were willing to do.

Brady’s parents had finally had enough. After watching their infant son suffer horribly, Jennifer decided to demand further medical testing on him. She felt alone, as if no one was taking her or her son’s condition seriously. There were no answers, so Jennifer decided to turn hopelessness and frustration into action, just as she had on that lonely night some months earlier.

“The doctors finally agreed to hospitalize Brady for further testing,” she said.

While Brady was hospitalized with an initial diagnosis of gastroesophageal reflux disease (GERD), no symptoms appeared. Without symptoms, doctors at the hospital refused to follow the pediatrician’s recommendations for testing, so Brady was sent home with the same diagnosis he was admitted with, but no real satisfaction for his parents that his medical issues had been resolved.

There were more prescriptions, but little results.

Within hours of returning home, Brady started to experience the same debilitating symptoms as before. While traveling for the 4th of July holiday, Brady’s condition lightened but returned in force as soon as they returned home. It seemed to Jennifer that something within their house was the culprit.

“I had suspected this before. Our house was making Brady ill.”  Brady’s change in condition had confirmed her suspicions.

After what Jennifer says were “many more hours of phone calls and arguing with doctors”, an appointment was finally made with a pediatric allergist. The results confirmed that Brady had a rare and severe case of environmental allergies.

“They tested him for allergies to dust, dogs, cats, cockroaches, and everything they tested him for came out positive,” says Jennifer.

The family immediately moved out of their home into a hotel room about 40 minutes away in the sprawling community of Deptford, NJ. Although he still has bouts with his many allergies, Brady is doing much better but the financial costs have been overwhelming.

“We live in a modest townhouse in Logan Township, NJ. We have seven and nine year old cars.  We live frugally in order to give to our son what he needs to survive,” said Jennifer.

Besides the costs of medical care, formula, and a hotel room, the family is also “gutting” their home in an attempt to sanitize the house so that Brady can return. Carpeting, window treatments and bedding are being removed, as are some of the subflooring that could have been contaminated by the family pets.

Gary continues to work every day while Jennifer organizes Brady’s day. Besides caring for her infant, Jennifer also takes Brady to all of his medical appointments, schedules the many follow-ups necessary to monitor Brady’s condition as well as organizing and overseeing the effort to sanitize the family home. In addition, the family has had to give up five cherished family members, three cats and two dogs. These pets served as “memorials” to significant life events the couple shared.

“They were our family, but we did what we had to do for our son,” Jennifer says somberly.

Jennifer also has to decontaminate herself after each trip to her home to monitor the work being done.

“I fear that any pet dander or materials may be on me when I get back to the hotel room.” Brady’s health depends on it.

The Blessing that is Brady

Jennifer wants to stress that Brady is not a source of frustration, sadness, anger or pity for

How we learn to count our blessings

the family.

“He has been a blessing to us. Despite what we are going through, he has given us so much joy, love and purpose.”

Part of this purpose is expressed in Jennifer beginning to start her own non-profit to help other families not only clear similar hurdles, but also empower them to face other challenges along the way.

“There is nothing you can’t learn from. Nothing you go through is an accident. Everything I have been through in my life has prepared me for this moment,” says Jennifer. “I have always tried to help others, and this experience has shown me how many people we can help without even having to go far to look.”

The experience has also shown her that people want to help. She has had anonymous donations that helped the family stay in the hotel room, for example. Her family and friends, many of whom she had lost contact with over the years, have appeared in her life to help. Strangers are doing what they can and asking for nothing in return.

“My family and friends are pulling together. Strangers from other states and other countries are reaching out to us. It’s been an amazing experience. We just look forward to the day when we can return home and begin our life as a family. I just want to be a mom.”

Jennifer is a mom whose experience has provided her with a purpose to help others in empowering themselves to clear similar hurdles.

“I want to pay it forward,” she says.

Jennifer has created a Facebook page called “Operation Bring Brady Home” that serves to bring awareness to Brady’s condition as well as a place where people looking to help can

Click and LIKE "Operation Bring Brady Home"

reach out. There are lists of companies who have helped, as well as information on what is needed given Brady’s special condition. Any assistance that can be provided is welcome, and can be something as simple as “liking” the Facebook page.

“A single click can have an impact,” says Jennifer. It’s something she’s learned in this experience: the slightest act can have enormous impact in just raising awareness to Brady’s condition as well as providing insight to others in need.

Looking at Brady’s beaming face in the many pictures of him on the site, one can see how lucky the world is to have him, and in hearing the resolve in his mother’s voice along with the dedication and love of his father, one can see how lucky Brady is to have parents like these. They count their blessings in their little boy, their family and their friends as well as perfect strangers who offer a helping hand whenever possible.

Yes, despite being only four months old, these are the gifts that Brady DiMattessa has offered the world. The world can look forward to a story that is yet to unfold, and an experience that can be drawn on for a lifetime.

©2011 Thomas P. Grasso All Rights Reserved
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