HOPE FOR JAVIER

INFINITE POSSIBILITIES

Sun, 14 Sep 2008 08:29:41 -0400

Sunday, past midnight and cannot sleep. Stared at Javier for what felt like a really long time. Still unable to stop or even slow the racing in my mind… Listened to him breath, watched his restless sleep, tossing and turning in discomfort caused by cumbersome leg braces. Tick-tock, tick-tock… Not sleeping is nothing new; writing instead of trolling message boards looking for other Duchenne parents awake at this ungodly hour (or in a different time zone), writing instead of reading more about the progression of the disease than is necessary or good for a parent’s survival… this is new.
I had some time this evening and used it to go through hand me downs from Javier’s cousin Harry and to pack up clothing that no longer fits for Javier’s new cousin (arrival imminent). A lot of Harry’s clothing has a sporty theme; so many shirts are emblazoned with a football, a baseball, a soccer theme. I imagine how Javier might feel, as he gets older, wearing this sporty clothing, representing games he will be unable to participate in. Every shirt that passes through my hands, every Nike swoosh, every rah-rah football is like a cruel joke. Despite that Javier is a couple of years from even fitting into this stuff, I angrily toss each item into a bag for my brother’s baby that isn’t even born yet. Irrational? Maybe. But saving clothing that will not fit for 2 to 3 years, during which time his body will deteriorate, becoming less and less “athletic”, forcing this wardrobe issue to be addressed again in two years is not something I want.
Then I come across a box of stuff I haven’t looked at or thought about in ages; a box with a few outfits I saved from when Javier was a newborn, a rattle and the blanket I had him wrapped in almost every day for the first year of his life. I smell the blanket and it smells like promise. It smells like infinite possibility. I remember that first year of Javier’s life, of all our lives that year; talking about what an amazing salsa dancer Javier would no doubt be, what a real live Latin lover he would be, what college he would attend and all the girls that would never be good enough for him. For a split second I think about throwing all of it in the bag destined for my brother’s baby. I kept it. I kept all of it. Maybe in another year or two, when I’ve forgotten it is in the back of the closet, I will come upon it and smell all that promise, all those possibilities again. That Dreft baby detergent, it is an amazing product… How they infuse clothing with the scent of potential is amazing.
I took for granted that Javier would have the world laid out in front of him, with only the normal wackiness of youth as his personal hindrance. We all took that for granted the first time we saw him. The infinite possibilities have given way to an intense hope on good days, a terrifying anxiety on others. The hope we hold out for is that there will come a time when science will catch up, that Javier is here when it does and that one day… one day we will be rewarded by being able to take something as extravagant as Javier turning 30 for granted.
With your support, nothing is impossible.
With sincere gratitude, Jen

THE PORTNOY SISTERS STORM CAPITOL HILL

Mon, 31 Mar 2008 12:33:27 -0400

Day 1
As soon as we arrived, the training and education began. We learned about how bills move through congress and the senate, how they (hopefully) get authorized and get funding appropriated. Even though a bill might get pushed through or renewed with a certain price tag attached to it, it doesn’t necessarily mean that the requested amount of funds are what is ultimately appropriated. And the really frustrating part is that once you’ve done all this, you’ve gotten your bill passed, gotten it through appropriations, the recipients might still not get all of the promised funds when it comes down to it.
This first day, all of the families in attendance had to introduce themselves and explain what or who was the motivation for their attendance at the conference. I’ve heard a lot of personal stories from other families but when you hear over a hundred of them, one after another and coming not in an e-mail or on a message board but directly from the mouth of a crying parent, aunt, uncle or grandparent, it is overwhelming.
A father got up to share and said that their son had just been diagnosed Becker MD, which has an average life expectancy of mid to late adulthood. I remember that when he shared, I thought to myself “wow, are they lucky…”. That just goes to show you how totally insane this disease makes you, as I’m sure the last thing they think of themselves as is “lucky”. When you think about Javier and how bad his prognosis is, it is hard to remember that there are families with 2 and 3 affected boys. It brings even this horrible situation into perspective a bit.
Day 2
This was our first day of going around to all of our district’s congressional offices to make our appeal. Since we are from New York, we didn’t have to put up much of an argument to get the representatives staffers to agree to sign onto a bill that provides funding for research and care specifically related to the most severe forms of Muscular Dystrophy. Believe it or not, there were constituents from states that got a negative response to this request! I’ve made note of all the states that you would never want to live in should you find yourself afflicted with a fatal disease and would be happy to provide you with a list…
By the end of the first day, I started coming down with the cold / flu virus that has touched nearly everyone by now and was forced to return to the hotel to suffer in solitude. What I should have done is gone around to the offices of politicians who would not sign on to our bill and spread the virus that I was infected with. Stasia thought it would be rude.
Day 3

I remained in bed and Anastasia pushed on, visiting offices in the senate buildings. The best part of this day (aside from being in the offices of Schumer and Clinton) were when Anastasia saw the secret subway that runs all over DC and is for the use of politicians only. I had told everyone about it on Day 2 but no one believed me. I cannot believe I was sick and missed this sighting. Stasia took a picture and e-mailed it to me. No one has heard from her since she took a photograph in the senate building…

We did our part. We were proactive, a part of the solution (we hope). Then it was back home to the reason we do all this in the first place, our families. My sister’s friend Jen recently imparted the wisdom that “it is the life in your years and not the years in your life that matter in the end”. I don’t know if all this we are doing is going to make the difference in the end that we are all desperately hoping for… and I’m not saying that we are going to slow down on our search efforts, only that I am going to make the years Javier does have as happy as I possibly can and try to soak up every last bit. Now everyone get off your computers and try to live by the same credo!
Best, Jen

A RACE AGAINST TIME

Mon, 4 Feb 2008 12:52:31 -0500

It’s been awhile since I’ve done an update and there is so much going on that I want to share.
We are all happily surprised and extremely grateful that Charley’s Fund is still receiving donations in Javier’s name as a result of our first fundraising appeal. The generosity shown by family and friends (and friends of friends) overwhelms us, fills us full of hope and moves science that much closer toward finding a treatment or cure for Duchenne within Javier’s lifetime.
The more scientific advances and research I read about, the more certain I become that the science behind the discovery of a treatment can and will be solved. The question that keeps me up at night is whether or not we can conquer the clock.
At the end of each day as we put Javier to bed, I am very aware that the day that has just passed is one of a numbered few. Every night I watch him sleep, sometimes for hours, studying his beautiful features and finding it impossible to grasp the sheer havoc that is running through his seemingly perfect little body. I look at his legs, wondering if science will figure this out before they fail him. I listen to him breath easily, knowing that one day, that act that we all take for granted will be taken from him.
In keeping with my family’s commitment to Javier, to do whatever is within our power to change his fate, we press on, both planning and participating in new events. My father is funding Anastasia and my trip to Washington, D.C. next week, where we will speak on Capitol Hill to request the reenactment of the MD CARE Act. We will again have the opportunity to speak with leaders from the NIH and the FDA, as well as scientists who are leading the fight to find a treatment or cure. As you can imagine, we are totally excited to participate!
We are also in the beginning stages of planning the next Hope for Javier event. I am so pleased to announce that DMC (of RUN-DMC), one of the founding pioneers of rap music, has committed to participate in our event. Darius (of Darius Goes West fame) and the entire DGW crew will be on hand and Darius (Big D as he’s known in rap circles) will perform for the crowd with DMC! We are working on even more surprises to ensure a fun filled evening and will keep you posted with all the details.
Thank you to all who take an interest and / or participate in the journey toward saving Javier’s life. We could not go it alone.

DARIUS GOES WEST FUNDRAISING EVENT

Thu, 6 Dec 2007 13:00:38 -0500

After the months of hard work, the build up, the nervous anticipation of how our first ever Hope for Javier event would turn out, I am happy to report that it was a resounding success.
So many people were involved in the initial setup of Hope for Javier and even more came forward to help ensure the event’s success. I am so thankful for everyone who has volunteered advice, time, goods and services. We couldn’t have had as big a success without all of the support we received.
My Sister Anastasia was the glue that held everything together (including me at various times along the way). The biggest reason for our success (that night and always) is Anastasia. She has always got my back and works hard to keep me on track and focused.
In the months leading up to the big night, in pursuit of donations for everything from various services to auction items, I had to write or speak the words “my son has a fatal genetic disorder” nearly every day, well over 100 times. After some time I became anesthetized to the statement and I just said the words, having convinced myself that they do not pertain to us (denial is great until reality hits you… with a sledgehammer). During one such appeal, the person I was speaking with began to cry and I, having trained myself to “just say the words, just say the words” (that was the mantra), wound up consoling her. Of course there are plenty of times that no matter how hard you try to just keep moving forward and keep the negative thoughts at bay, you realize that they are not just words. They are the real, devastating facts about a disease that the sweetest, most pure of heart boy suffers from.
After having no idea how many people would attend (but fearing low attendance), we packed the room that night! And it was overflowing with caring and concerned friends and family, all of whom have joined us in our fight to make Duchenne history in Javier’s lifetime.
In the end, we raised over $160,000 and we are far from done. We also raised awareness of this fatal disease, as well as the very real medical prospects that are on the horizon, with our hopes within Javier’s lifetime. And in addition to that, we brought Darius into the lives and hearts of everyone in attendance, all of whom now know that physical limitations do not have to limit your happiness, your spirit or your sense of adventure.
Thank you to everyone who has shown support for this worthy cause. With your help, we can make Duchenne history.

BOOT PARTY

Tue, 31 Jul 2007 13:10:43 -0400

Last night, Javier's first night with his new leg braces, Anastasia made a boot party in Javier’s honor. She made a feast to feed an army and invited a few of Harry’s friends (Javier loves being around and totally idolizes big kids). After dinner, all of the adults and kids put on their biggest winter boots – some even donned ski boots – and we explained to Javier that wearing boots to bed was totally normal and that we all did it. Stasia served a cake decorated with boots that the bakery fashioned after the actual braces (Stasia went with a picture for them to duplicate) and then the kids gave Javier presents, as if it were his birthday (the showering of presents does not help when you are raising an only child and trying to keep them kind of grounded and unaffected). Then the kids put on a play in the living room for Javier all about boot wearing and its benefits.
The night of the boot party, we battled with Javier over wearing his braces and in the end, they were only on him for about 30-40 minutes. He screamed the entire time they were on, making it a horrible end to a nice evening. I thought that after having seen all of the big kids and adults in boots, if we couldn’t convince him to wear them that night of all nights, we would never win this one.
Tonight, just one day later, the battle was over. Richie brought Javier to bed, put on a knee brace that cousin Mary Sue sent to us, and they both fell asleep wearing leg braces.
I know this sounds ridiculous because I should just be happy that at least for tonight it went off without a hitch but when I went upstairs and saw him fast asleep, looking so sweet and peaceful, I actually felt a little bad that we won; like he gave up fighting a fight or something.
Anyway, I’m sad because I just looked at my almost 3 year old in leg braces and that just plain sucks but I’m sure he will fight me on everything tomorrow, at which time I’ll be grateful for tonight.
Thank you to everyone at Anastasia’s last night and especially to Stasia and Dave for being the best Aunt and Uncle. When I tell everyone what you guys did last night they tell me how lucky I am to have you and I say "I know!".