It has not been fun at home, more so when we’re on the run.
Two babies were slaughtered in my neighborhood’s prime intersection. I say slaughtered without flinching. They were run down by a women that had no business driving. I think all of you can imagine the horror of something like this hitting your community. As a mother that strolled through this intersection almost on a daily basis with fellow mom’s. We call ourselves the Park Slope stroller brigade.
Jonah and I took off to Portugal a few days later. I came home to the news that my sorority sister passed, Krista fought a champions fight against cancer. Out of all my sorority sisters and there were a few hundred, Krista had the purest soul. I doubt any one of my sisters would challenge me on that. Krista always had a smile and a hug for you and a word of advice. I hadn’t seen her since college graduation, when we reunited, it was at JJB’s first fundraiser in OR and she came to everyone since.
A few days later my friend Jennifer and Tracy’s daughter Laine passed away from Batten disease, she followed her older brother Noah. For Krista and Laine we knew the end was getting closer, I had a chance to brace myself. A week after Jonah and I got home from Portugal I turned around and went to Chicago for Laine’s services. Logistically it was impossible for me to get out to OR for Krista’s services.
My need to be at Laine’s services was strong. The VanHoutan’s have always been there for me as a sounding board and support. Our diseases both fall under the same umbrella of Lysosomal Storage Diseases. Tracy is at all of our overlapping conferences. I thought about Jonah passing and who I’d like to have at Jonah’s services. I love my family, but it would mean a great deal to me to see the faces of parents that traveled the path before me. You don’t know that bond until you’re in it. Perversely I wanted to see what the ‘after’ was like. How were the VanHoutan’s coping? Maybe it would give me an idea of how I’d cope. I just don’t want to fall apart.
I came home and started prepping for our trip to SanFrancisco. A few days before I left, tragedy struck our neighborhood again. I woke to find an email in my in box from our friend Zipi. I assumed it was the new Spring schedule for the art classes that she teaches. I had to read the email over and over again. Disbelief, I thought it must be some kind of spam. There was no explanation as to how Zipi’s amazing and healthy husband passed. Just when and where his services would be. I saw Muli and Zippi and their two little girls almost daily. They live down the avenue from me, we walked to school together. Zippi was Jonah’s art teacher, Zippi held a fundraiser for JJB, and the whole family always came to JJB’s fundraisers and even volunteered for set-up and breakdown. Muli was the best dad any child could ever have.
Muli and Zippi were prepping their daughters to walk to school by themselves. They do that in my neighborhood. It’s so busy and the drivers don’t pay attention. Kids hopping in and out of moving cars; middle schoolers causing chaos on the sidewalk. Nervous parents follow their kids at a safe distance, pretending to not be watching, but studying every step they take, how they look back and forth and the speed in which they cross the street. Muli was doing this the weekend before he passed. I saw him across the street smiling at his girls, who were waiting to cross. I strolled up next to the sisters they were anxiously waiting and possibly rolling their eyes. I asked them if we could go and they looked at me their eyes said: “Uh duh YES” too polite to say what they were thinking.
I smiled at Muli and he shrugged and smiled back. We both knew how scary this right of passage was, even more so after the deadly crossing down the road from us. Muli had an unexplained medical mental episode. It came out of nowhere. Out of respect to the family and his little girls... It's not my story to tell. https://www.gofundme.com/7unsed-support-the-green-family
Three Mom’s were walking along 5th Ave. with kids in-tow, they came to the 9th st intersection and crossed when the light turned. One Mother was pregnant and holding the hand of her young daughter, the second mother was pushing her little boy along in his stroller. Her youngest was at home. The third Mom, my friend Christy had just made it across the street with her son Ace. The three Mom’s were walking home from prayer group. Christy turned to wave goodbye to her friends. A driver stopped at the light, paused and then pushed the gas, she pushed harder. She hit 5 people (an older man as well) she killed the little girl instantly and she drug the little boy in his stroller down the street a block, killing him. The mothers laid in the street, seriously injured screaming: "I want to see my baby” “Just show me my baby.”
Christy stood in horror then fell to her knees. Looking into the eyes of her friends dead son. The driver had MS. She had 12 citations over the coarse of two years, three for running red lights and three for speeding in a school zone. Christy testified at the grand jury a few weeks ago. The driver lost her license and was arrested. She has posted bail and is awaiting trial. A physician that had seen the driver two weeks prior to the incident, also testified. The driver had called 911 to her home for medical reasons. The attending physician testified that he told her that she should stop driving. NY state does not have the state law that requires doctors to call the DMV when they think a person is no longer physically capable of driving due to a medical condition.
What is going on in my brain: depression, insecurity and sorrow. Anybody’s life could change forever in a moment. Thinking about all these deaths, deaths that are for normal people other people, not my new normal life. The deaths sent me to a bad place. I questioned... what the fuck am I doing with my life? Why am I spending every free moment working my butt off for a treatment that may not come in time for Jonah? I hate what I do for a living (fyi I don’t get paid) the pay off is a treatment so no parent has to endure those words: “Your child has a terminal illness for which there is no treatment."
But why am I the person taking the lead for a treatment? Why can't someone else do it? I just want to be a mom and hang out with Jonah and his dad.
I look at Jonah, he’s doing great, all things considered. I think about how much more he could be if I spent more time with him. He can virtually read, his adding is pretty good. His behavior has worsened, but I’m hoping that’s temporary, his dad is home on hiatus and we have been traveling a lot. So I’m thinking that when things get back on schedule he’ll mellow out.
I took Jonah to Portugal with me. Raquel rented us an awesome house and two neighboring flats. We try to do an annual type C patient population meeting, we set them up around conferences so we can meet with our scientists as well. This year was our largest meeting thus far, we had 4 French families, 1 UK, 1 USA, 1 Portugal, 1 Finland and 1 from Spain. There were 7 MPS IIIC children in the house. For several of the families it was the first time ever seeing another type C child. The kids ranged in severity, but all could still walk and talk. The 4 year old picked up an ottoman and chucked it at me. So they were pretty mobile. Brian Bigger came over to the house and sat at the round table to present to the families our science. I brought Elvis with me, our resident French translator. The whole experience was incredible. Brian hung out with us for several hours, from a scientists perspective and a father himself, I think he was genuinely moved. A few weeks beforehand Phoenix Nest (my virtual biotech) and Manchester, Brian’s university, FINALLY agreed on the terms of our license agreement. Brian passed me off the hard drive with all the data that he and his lab had acquired over the last 7 years. This was a pivotal moment. I’m very glad that the passing of the license physically happened in the presence of the H.A.N.D.S. We did it.
Back at home, for a two week turnaround before my trip to a rare disease drug conference in Maryland, WODC. The WODC was very productive place to meet people an otherwise lame conference. I made the contacts that I wanted to make. Stalking people that would otherwise have been very hard to make contact with. Stalking people is my specialty.
Home again, head spinning and fingers typing, touching base with those that I met at WODC. Muli dies, everything stops for reflection. I went to his services then the next day flew to SanFrancisco for a BioMarin, media workshop for advocates. BioMarin had a pre-function where they gave us a ‘love lock’ to place on their campus sculpture.
Today is MPS awareness day, I hung the other lock on the overpass that Jonah and I walk by everyday. While in SF we met up with Jeremy’s little brother Josh, we discussed social media and the different platforms that JJB uses. Josh said that he liked my blog the best. Which I don’t consider a social media platform for JJB, this is just me. I created the blog for my family, Josh and the rest of our immediate family, so that they know what we’re up to. After years of blogging we have thousands of followers. I don’t know who all these people are, but I do know that many are in the pharma industry and many are other Sanfilippo families.
https://youtu.be/eiBVkVcrihU
There is a line that has just been drawn in the sand.
As the founder of a non-profit and good friends with numerous families and the founder of a biotech that intends to bring a treatment to trial for these families. I’m supposed to pick a side: MPS III parent or MPS III pharmaceutical CFO creating a treatment for our kids.
My goal is to get JJB to a stable financial place, where Mari’s salary is funded and she has employees and an office to run JJB from. No more working from my kitchen table at soccer practice or a local bar stool. JJB will focus our attention on our awareness campaign: Mission Hide and Help and our patient registry ConnectMPS. The MPS IIIC and D NHS (Natural History Study) sponsored by JJB will need substantial funding to cover the out of pocket medical expenses and travel for families. Legislative bills that support rare disease research are of paramount.
I will still be a part of JJB and help with fundraising and guidance but I can’t wear both hats to the extent that I have been. I won’t be blogging about the nuances of the research anymore. My blogs will be more like this. Everything is under CDA’s and NDA’s and I can’t share anything about a trial. The line that keeps running through my head: "This shit just got real."
Supporters we still need you in a major way! JJB needs continued funding in full force and your participation with Mission Hide and Help. https://missionhideandhelp.org/
You can help right now, my birthday is coming up in a couple of weeks, and just like last year, I do not want gifts for me. Instead I need items for our next charity fundraiser. Everything on my wish list will go toward our raffle prizes at this years "Hansel & Gretel" themed Halloween party, mark your calendar for Oct 28th, Shape Shifter Lab. Last year our Amazon Smile JJB Event Wish was a huge success, it made the event and my B.day worth while. You have no idea how much stress this alleviated from my life.
You can get us started now.
https://www.amazon.com/hz/wishlist/ls/3MR2XEXXAI90J?&sort=default
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| Zipi Green and I at 'Light's of DNA' a fundraiser hosted by Zipi's art studio. |
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| Noah's Hope and Jonah's Just Begun. http://www.noahshope.com/ https://youtu.be/eiBVkVcrihU |
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| Krista in the middle. We love you girl and will never forget the love that you brought to all of us. |
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| Sanfilippo Portugal, JJB, Sanfilippo Sud and Sanfilippo Barcelona- Holding the little black box. The recipe to a treatment for our kids. |
