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Friday, April 20, 2012

Insight from a good friend. Justine gets it, she really gets it.

A few months ago, I stepped off an elevator in Brooklyn to find a beautiful blond haired boy with an infectious smile singing a song as I walked towards him. You would never know that this was the first time that we had met. You would never know that one year ago we were total strangers. You would never know that a rare genetic disease could end his life, long before his time. But, then you would surely not know Jill, his mother, who is fighting with every ounce of fight that a mother has to make sure that this does not happen.

Just a year before, my son was battling several issues, including severely delayed speech, multiple ear infections, trouble sleeping and more and we could not find any answers. One morning, as I was getting ready to leave for work, I happened to see Jill speaking on Good Morning America about her son, Jonah who has Sanfilippo Type C. As she described her son’s issues and I watched Jonah on television, I felt a moment of connection and then instant panic. This was Ethan. Everything she was describing and even the behavior was so similar, I immediately hit the record button so that I could show it to my husband that evening. That night after he watched the segment, he share my concern; this was Ethan.

I called Jonah’s Just Begun the next morning and to my surprise, Jill picked up immediately and we talked for more than thirty minutes. Over the next month she became a pillar of strength for me as I waited for test results, fought to get into Geneticist’s office and listen to one doctor tell me that I should be more than fifty percent worried that he would be positive for MPS III, the disease known as Sanfilippo Syndrome. It was the worst time of our lives.
Thirty days later and all of the test results were in. Ethan was negative. It was one of the greatest moments of my life, however bitter sweet. Bitter sweet in that I had now fallen in love with this little boy a thousand miles away who was not so lucky one day six months before. Bitter sweet because I imagined the heartache his mother, Jill, my new found friend, must feel every day since the day she was given the worst news of her life. Bitter sweet because she had helped me and held my hand through the phone and was so genuinely happy for us when we received our news, when she had only been dealing with her news for less than six months.
Six months. Jill was listening to me cry, calming my fears and talking me through every step and she had only known about her own son for six months. This had to be one of the most incredible women I had ever met. When Jonah was diagnosed, she did not lock herself in a room and wait for him to die. She did what most mothers would like to think they would do, but many wouldn’t; she started fighting. Fighting that consisted of forming Jonah’s Just Begun and beginning to find others with the same type of disease as Jonah (since Jonah is Type C, there are few children that have been diagnosed). She began raising money, finding doctors and working with drug companies to get clinical trials off the ground. It is astounding what she has accomplished, not only to save her son, but the others with Sanfilippo Syndrome. I truly believe that there is nothing she cannot do or would not do for Jonah. She will find a cure and she will watch her son grow up, just as it should be.
I sat on the floor in their apartment in Brooklyn playing cars with this amazing little boy. I watched him as he took a chair to make a ramp for his cars as his dad had taught him earlier. As he dropped the car from the top of the chair and it raced down to the bottom and soared off the edge, I listened to him belly laugh as I would snatch the cars in mid-air before they hit the ground. Over and over he would drop them, never tiring, only hoping I would miss once in a while so he could laugh even harder. That afternoon we strolled the streets of Brooklyn in the rain, shared a horribly delicious dessert, and played in the park. It was one of the greatest afternoons and I was truly sad to head back to my hotel in the city that night. It felt as if I was leaving my family. Suddenly the normally exciting lights of Times Square seemed so unappealing. I wanted to go back to Brooklyn and hang out with these two the rest of my time in New York.
I have been forever changed by meeting Jill and Jonah. I speak to anyone and everyone who will listen about Jonah and Sanfilippo. I use my summers for small fundraisers and talks. It’s not a lot, but anything and everything helps. If everyone who heard about Jonah shared his story or made a donation to Jonah’s Just Begun, it would ensure that Jonah would continue to play with cars and even drive his own car one day. For the brief moment that we feared for our son, it was the hardest time of our lives. Jill and Jeremy deserve to not have to worry about their son anymore; at least not the fear that they may lose him before his time, but rather about a broken bone from football or a broken heart from his first girlfriend. I am waiting to be there for both. -Justine Andollo

After the GMA interview, JJB's phone rang off the hook. 95% of the emails and calls were from solicitors trying to sell us miracle cures or the power of prayer. I turned the ringer way down and screened. I could barely make out what Justine was saying to my V.M., but I heard the desperation in her voice. This women was for real and she was scared. This was the reason for the interview with GMA. I grabbed the phone, before she could hang up. Just as desperate as she was to make a connection. Justine is a force to be reckoned with, she'd do the exact same thing in my position. Thanks for the support, inspiration, and motivation. Today I will press on. xo Jill