September 5, 2014 mcfadyena

It's Been a While

Trey & his new service dog, GriffinThis is Trey & his new service dog, Griffin. Griffin gets to go to hospital appointments, UNC, therapy appointments, swimming lessons and everywhere in between with Trey!
I felt it time for an update. Folks have been asking about Trey, about the IT trial, about Jack, gene therapy…
Trey is groovy (he can swim, can you believe it??). It’s weird, being where we are, but I’m going with it. I was told my son was going to die and I was going to watch it happen. Now he’s not. I’m not watching him lose anything, in fact I’m watching him learn and understand more and more every day. I’ve lost my desperation, my intensity, my anger, my fear. Of course those emotions are still there on some level, but they’re not front and centre. Although we have a lot more medical appointments than our neighbours, they’ve become routine, they’re no longer terrifying, so they’re kind of weirdly, normal. I feel more like my neighbours than ever before. And less like a mom to a child with a progressive difference. Which is awesome and at the same time, makes me so sad for my fellow MPS II moms who don’t get to feel the same.
Having spent years fighting and breathing fire, I am taking this space, this ability to breathe, to work on my attachment. As most of you know, I teach yoga and I read a lot about yoga and enlightenment. MPS made me do it. MPS drove me crazy, so that as soon as the craziness took a break, I searched for a way to find my sanity, my clarity again. Although Trey’s doing awesome, I am learning that part of being human is suffering, so I am going to suffer often and a lot, again. Eckart Tolle wrote something that I have been sitting with for about a week now:
“Humanity is destined to go beyond suffering, but not in the way the ego thinks. One of the ego’s erroneous assumptions, one of its many deluded thoughts is: ‘I should not have to suffer.’ That thought itself lies at the root of suffering. Suffering has a noble purpose: the evolution of consciousness (the awakening) and the burning up of the ego. The man on the cross is an archetypical image. He is every man and every woman. As long as you resist suffering, it is a slow process because the resistance creates more ego to burn up. When you accept suffering, however, there is an acceleration of that process which is brought about by the fact that you suffer consciously. You can accept suffering for yourself, or you can accept it for someone else, such as your child or parent. In the midst of conscious suffering, there is already the transmutation. The fire of suffering becomes the light of consciousness.” Eckart Tolle
The sooner I can accept suffering and be with whatever comes up, the sooner the intensity will die down and I can begin to see everything as beautiful. We’ll see when things get intense. I’ve had non-MPS opportunities to suffer, to sit with it and to allow space for suffering, but not the watching your child die in front of your eyes type of suffering that some of my close friends have to do. Which in my books is completely different.
I don’t assume for a second I would have had the chance to explore my spirituality had Trey not gotten into the trial, in fact, had Trey not gotten into the trial, I think my crazy would have only intensified, so I accept this knowing as part of my path. I am doing the best I can with what I’ve got. It’s hard, when my friends are still watching their sons die.
Which is why I’ve been here less. I’ve been reading and contemplating and meditating and practicing yoga and watching and learning from my kids and life more. I’ve been sitting in the quiet moments, finding space. I’ve fallen off the MPS radar a bit. I still have a decent idea of what’s going on because we fund research and fundraise and I talk to my MPS friends, but not as much as I used to, which I attribute to not being as desperate, not having to fill the space, to do something, to keep the fear out. The way I was before wasn’t sustainable. I’m working to find sustainable, because I can.
For an update on Jack, he is about to turn 7 and he is progressing with the way MPS does. Walking Jack’s path with his mom Jamie, is painful and hard, unfair and unjust. She recently wrote a blog that you can read here.
The Intrathecal Trial Phase II/III trial is now in full swing, the new IT device has been approved and in the next months we will be flying to UNC to have it placed, let’s hope it works better than the last one did!
MPS II Gene Therapy animal model research is also in full swing in different labs around the world (you can read our Grants page here to see the research we’ve funded). We want to move things along faster than they are going (always with rare disease). Having recently spoken with a researcher in the field, what he suggests is getting all the MPS II GT researchers in the world together, have them settle on a virus vector and then throw millions into this one vector and bring it to human clinical trials. This is controversial (please feel free to leave comments below, conversation is good!), but after speaking with another MPS II parent in Spain, I feel we need an organized worldwide MPS II group to organize a researcher meeting and also to organize MPS II Research funding groups to save their money and all throw it into GT… any takers?? Your thoughts?
If you have questions about anything I’ve said above, as always, I’m here. In solidarity and with love,


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