I obviously care and I want everyone else to care too. More importantly I want people to understand. Compassion and understanding not Ignorance and bullying. https://youtu.be/PX9reO3QnUA
Jonah has opened my eyes and changed my life. I see people and view life in a whole knew way now. I see people on the street struggling to walk; a person at the bank struggling to talk and I wonder what their ailment is. Not out of morbid curiosity but for the sake of knowledge. I want to understand.
In high school there were two sisters that had something going on. They were not overtly disfigured or cognitively impaired, they had slack muscles and thick fleshy skin. The girls had very few friends and seemed lonely. I wanted to know what was ‘wrong’ with them. But who did I ask? Thinking back, I wish I would have just asked one of the girls directly about her condition. Just knowing could have broken the ice for a friendship.
People don’t know how to respond to someone that is different. For me, I just didn’t want to say something wrong and hurt their feelings. I figured it was best to just not say anything at all. Which in retrospect probably made the girls feel worse.
Their father worked at the gas station in the next town over (in OR an attendant pumps your gas). Everyone called him ‘wobble arms’. My HS sweetheart called him that, he thought it was hysterical watching him pump gas. I was dumbfounded the first time I witnessed it. So not funny. I’m not going to describe it, because I don’t want you to laugh. The man deserved respect. He put himself out there where the whole fucking town could see him, trying to make a living. Trying to support his daughters that we all went to school with. I put 2 and 2 together, obviously the syndrome was genetic and this would be their fate too.
His daughters took tap dance lessons at my studio. Their mom was super nice but as shy as a butterfly. The classes had to have been a strain on their household budget. But now I get it, the classes were physical therapy for the girls.
At the beginning of the month I went to our annual conference on lysosomal storage diseases, WORLDsymposia. Before I left I attempted to book a meeting with Jonah’s principal. I wanted a sit down meeting with her.
She didn’t have time to fit me in before I left for San Diego, so I attempted to tell her what I wanted over the phone. My ask wasn’t something that could be simply done over a brief phone call.
First off, I wanted the school to recognize rare disease day (RDD) by marking February 28th on the school calendar and ask the kids to wear purple. They have done this kind of thing on our school calendar in the past. Wear pink for breast cancer awareness.
My request exasperated my school principal. She said: “Oh Jill if we did that then I’d have parents calling me complaining that now they had to explain a rare disease to their child.”
I also wanted to have a take home sheet about Mission:Hide and Help sent home in the kids back packs. My principal started in on how hard this would be to get accomplished.
As if I care about hard, how hard could talking to the school board be in comparison to what I do on a daily basis. It took me two years to license a gene therapy program and all I did was talk. I know all about politics, lawyers and bureaucracy. Talking to the school board about rare diseases is nothing. Remember I have been very successful in moving members of congress to take action for rare diseases. https://www.youtube.com/watch?v=NXRG-qmBY1k&t=3020s I just can’t stand how complacent people become, when something takes a little effort to achieve.
Bullying is a hot topic at all of our schools, Jonah is a prime target for bullying. I worry about it every time he leaves the house.
The other day Mari asked if I had seen the movie Wonder?
I responded: “That’s a coincidence Jonah’s school had a showing of the movie and the author of the book was there for a Q&A. But I didn’t go, we were in SD for the conference.”
I didn’t know what the movie was about, I just saw the banner advertising it on the front of Jonah’s school. I also got the notice about the movie event in Jonah’s folder. Jonah had even stopped me and pointed out the Wonder banner and said he had watched the movie. He attempted to give me details of the movie but the brain damage that Sanfilippo causes prevented him from being able to articulate the message of the movie.
Mari explained that the movie was about a 5th grader that had a genetic syndrome that caused serious facial deformities. I immediately pulled up the movie on Itunes and started to watch.
This isn’t a spoiler alert. I want you to watch the movie!
Jonah doesn’t have profound body deformities like the boy in the movie. Jonah’s facial and bone deformities are so slight that the average person and even an experienced physician wouldn’t pick them up. Jonah is 9 but he is cognitively a 5 year old.
When I found out that my school was promoting the movie Wonder, l I flipped out! I flipped because this is exactly what I had just asked my principal to do and she said it would be too hard to accomplish.
Meanwhile many of the classrooms had already watched the movie at school. Jonah being one of those kids. Jonah, also being one of just a handful of the kids at his school that could directly relate to this movie. Nobody called me to say: “Hey we’re going to show a movie that might profoundly resonate with your child.”
I want RDD on the school calendar. I’m deeply appreciative of the PTA’s Author Committee to show this movie at school. Wonder is exactly what I want kids to see and think about.
We could have tied in Wonder with rare disease day. I’m disappointed in the lost opportunity. If only I had known what the movie was about before I left to SD. If only I had had more time. If only my principal would have put 2 and 2 together and said: Hey I know… this is perfect introduction to the movie Wonder that our school board is hosting.
I’m really very frustrated right now. I wanted to talk about JJB’s RDD event, which is open to my local community but is scalable to any neighborhood across the country. Local peeps please check out the details here and join in on the fun.
http://jonahsjustbegun.org/pokemonhunt/
A huge thank you to Brooklyn Game Lab for supporting this event and helping us raise awareness for rare diseases.
I also wanted to share my experience about our trip to SD for WORLDsymposia, it was widely successful, but I’m out of time now. There are lots of pictures on JJB’s FB page which will give you a sense of what we did. I don’t like using my blog to discuss the negative.
I feel better for venting. I plan on turning this experience into a positive. Stay tuned. In the meantime can you all please follow us on our Mission: Hide and Help, FB, Twitter and Instagram accounts? More importantly watch the MHH video and follow through with it’s message.
SHARE SHARE SHARE.
https://www.facebook.com/MissionHideandHelp/
http://jonahsjustbegun.org/pokemonhunt/
This blog is dedicated to Kevin, who took his last breath in his mothers arms a week ago today. Both Kevin and his mother are extraordinarily courageous people. They both taught me a lot about this journey we’re on and I’ll never forget them.
