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©2017 by Hope For Marian, Los Angeles, CA

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Science and Hope in Arizona

June 8, 2017

 

 

 

Well, it happened. I cried in public. The worst. I last cried in public seven years ago and still cringe when I think of it. Albeit that time, it was at work, in open court, in a two month sex abuse trial, the judge called me over when I started crying and as I walked back my coworker ran up to tell me I had a hole in the back of my pants and she could see my underwear. That time was worse. However, this time I brought my teary eyes all over the hotel - to the country club standing in a cocktail reception making conversation through watery eyes. In the hotel lounge sitting at a meeting trying to will it away, and finally in the hotel lobby pretty much just openly crying as people walked by. I was rescued by a very kind and loving fellow NPC mom and friend. At least this time no one could see my underwear. As far as I know.

 

Paul and I were in Tucson, AZ for the Ara Parseghian Medical Research Conference from Saturday until yesterday. The crying took place Monday, but I'll go back to Saturday. Saturday Paul and I went to LAX to go to the conference. We met up with another NPC mom, Rebecca, who had a layover and traveled together to Tucson. Rebecca is a ball of energy and great to travel with. She's been in the community for several years. Rebecca said sadly and solemnly that most of the people who were diagnosed when they got their diagnosis "are gone." She's straddling two generations and carries a heavy weight by doing so. As we sat on the plane Rebecca flipped through her phone quickly showing me photos of kids, past and present, in the community that she cares about, "alive...gone...gone...gone."

 

Also on our flight from a layover was another awesome NPC mom, Destiny from Missouri, with her one year old who has NPC - who is beyond adorable, see below, and another lovely NPC family. It was a party.

 

I loved hanging out with this sweet and strong girl. 

 

We arrived in Tucson and made it to the hotel. We immediately went upstairs to a meeting of parents called SOAR, which is a collaboration between a group of family foundations and scientists to identify, coordinate and fund important research areas to help accelerate a cure for NPC. It was an honor to sit side by side with these people and I have to say, scientists are really nice. I also have to say, I am still not very good at science. My uncle graduated early from high school, got a scholarship to MIT for science and engineering, my dad was accepted to Columbia University for engineering and had many science and math awards - although his Bronx PE class did make them swim in the buff which is a story for another day. I had a Chemistry tutor in high school and took algebra three times. I did get an A+ in Women's Literature and was great at social studies though, just throwing that out there.  

 

The meeting was about three hours and during the meeting break we somehow came away with a beyond belief complimentary room upgrade. Seriously, the Westin La Paloma and the manager on that day are so kind and reached out with upgrades to some of the families out of kindness.

 

Not to be a total love fest, but Sean Kassen who helps manage the Ara Parseghian Medical Research Fund at Notre Dame and Cindy and Mike Parseghian who started it are some of the nicest and deeply inspiring people, they made us feel so welcome and comfortable right away. I was also able to meet my NPC friend and mentor, Pam Andrews, in person who has been coaching us through this process and other NPC families which almost felt like meeting celebrities. Every single person was welcoming and instantly felt like a new family. 

 

I won't go through and list every person I met and my impression of them because I'm pretty sure that would be really awkward, but on the personal front - it was really extraordinary and I am so inspired by the warmth and passion of the families and scientists we met. We couldn't feel more grateful or supported on that front, and our kids are lucky to have every individual there fighting for them. 

 

Above: a gorgeous NPC mom with two beautiful and strong NPC babies 

 

After the SOAR meeting we went to dinner and got to start the process of getting to know the other families better. See above for how awesome they all are. After dinner was a presentation which I didn't really understand. I also am pretty sure I need eyeglasses since Rebecca kept whispering to me, "my son is number blank on that chart," and I'd squint my eyes at the screen and think, "where are the numbers?" To do: get my glasses to complete my transformation away from my younger and hipper self. 

 

The presentation ended and led to more networking and an exhausted nights sleep. Our suite had a jacuzzi which I did go in and fell asleep in, thanks Paul for saving my life on that one. I didn't go in the jacuzzi again because I decided I didn't want to die by drowning in a jacuzzi in Arizona; however, I did go sit by it a lot and enjoyed the view. To do: don't die. 

 

Above: the jacuzzi. 

 

The next day was a whirlwind of presentations and meetings as was the next. We did a news interview for ABC Tucson Monday morning with an awesome reporter, the ever gracious Cindy Parseghian, our Chicago hero Dr. Kravis and a wonderful family who are also newly diagnosed. Cindy Parseghian and Dr. Kravis are two heroes - there are not enough nice words about them. During the interviews a non-NPC family got off the elevator and were talking really loudly, the daughter shhhed her mom who said loudly, "don't SHHHH me, I'm not at the movie theaters, I can talk as loud as I want," even when she saw the filming. What a peach.

 

Paul flew home Monday. Monday by about mid day it hit me that Marian might die. I was sitting and listening to people talk and thought, I'm never going to understand this, there are so many things wrong with Marian and we can't fix all of them. I started walking down the hall thinking of charts and graphs and Marian's little face, her smile, and her potentially, possibly unavoidable fated suffering. It was not a high point.

 

I've also really been struggling reading about the little girl Stella in Florida who has been in the news. She is 2 and a half and her NPC is very advanced, she can no longer sit up or talk. Reading some of the things her parents told reporters about her remind me so much of Marian. I feel a connection with her even though I've never met her, I feel and fear for her and I also fear for Marian. I went to my room to take a breather, watched part of an Anna Kendrick movie, read a Holocaust book, felt better and tried to re-integrate into the meetings where I started crying and that's what led to that commotion. 

 

We signed Confidentiality Agreements to attend the conference since not all of the information presented has been published yet which is why I'm not sharing anything more. But, I will say, now that I have my sane hat on again today, we are very unlucky in some ways, but we are truly blessed to be part of this amazing community and collaboration that was spearheaded by the Parseghian Conference this weekend. They are truly phenomenal and it was an honor to attend side by side with scientists and families from across the world: all with one goal, to effectively treat NPC, to save our children. 

 

We are in this to fight it, to advance hope, to raise awareness and to help. We are more determined than ever that there is a path forward and this is it. The McGlocklins are here, for better or worse, and hopefully I won't cry in public again for another seven years. 

 

I missed the girls so much. This was the only time I was away from both of them and by far the longest I'd ever been away from either. Paul got home so late Monday that they were long asleep, he left for work Tuesday minutes after they woke up and said that was the worst feeling in the world - to be away for so long and then to leave again. Speaking of leaving again, I am home today and leaving tomorrow morning with Marian for her next Chicago treatment. We are really hoping and (fingers crossed) thinking this will be the last regularly scheduled one in Chicago until CHLA takes over, afterwards we'll fly back every 6 months only. I feel sick to leave Emily for so long. This morning she woke up, lay in my bed and said to me, "you'll take May May on your trip to Chicago so you won't get lonely and I'll stay here with dad so he won't get lonely." She is amazing. 

 

Lastly, our family friend Sherri Mudd, who is my mom's age and was one of her lifelong very best friends, stayed with our girls alone from Saturday to Tuesday with help from my dad and her family. She flew to CA from Hawaii to do this for us and not only that, she shuttled the girls to soccer, PT, OT, speech, a birthday party and a playdate. She is a speech pathologist by training and taught Marian to say, "dog woof" - her first two word utterance, sign for yes, and increased her tentative imitation attempts. She cuddled with Emily and read hours of books, played games, and took care of all the meals. Not only this but she's flying with me to Chicago tomorrow for Marian's fifth treatment. The girls love her and her family so much. Hopefully the feeling remains mutual after all of this! 

 

Until tomorrow, the saga continues!

 

Paul and I on our way to the ABC interview Monday morning. Yes we can. 

 

 

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