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- Hello everyone and welcome again
to the CIRM 2020 grand team meeting,
over the course of the last couple of days
we've had the luxury and the privilege of talking
to some extraordinary people,
and our next guest suddenly falls into that category.
Jake Javier was a participant
in the very first clinical trial that's ever funded
and we're delighted to have him join us now.
Hello, Jake, how are you doing?
- Good how are you Kevin?
- I'm grant come grant thank you.
So if we could start with you describing
what happened to you on the day
before you graduated high school.
- Yeah, so it was the last day of school
day for graduation like you said and,
went to friend's house and we were all swimming
and I dove into a pool
and ended up hitting my head on the bottom
and breaking my neck.
And I was immediately paralyzed from the neck down
and flown to a nearby hospital
to have emergency stabilizing surgery.
- I couldn't even begin to imagine what that was like
when you woke up I mean what were they telling you?
- You know it's not, it's interesting cause you think like
it'd be kind of like a movie where you get that moment
where it's like you're not gonna walk again,
but it's not quite like that cause you know
with everything going on it's just your initial instinct
is to try and survive.
Honestly, I mean I was at a point
where I was on a ventilator,
and I couldn't breathe on my own
and so there was so much going on
that I didn't really have time to really think,
you know about what was going on
it was just all right next step, move on keep going.
- And when did you hear about the clinical trial?
- So my old timeframe has shifted with,
you know, all the trauma and the medication I was on
so, hard to say exactly what day
but I know it was really early on
I think it was about a week after my injury,
about when I started becoming more conscious
and just got a call about it from Dr. Steinberg,
and he kind of started to explaining it
and told us all about it
and it was just a whole lot of information
that was coming in but,
we were very glad to get that call.
- It must be really hard though
I mean you're in the middle of a crisis
and then you get this call
and you're having to make a decision about something
that is experimental,
this was the first time that it's been tried and people,
how do you go about doing it?
I know you and your family are very close
and so obviously you worked with them,
but what did you talk about?
- Yeah, so I mean the obviously the type of
trial is new and everything but,
at this point everything was new for us.
You know we had no idea where we were gonna go from here,
no idea what the next steps were,
so, for us we just saw okay there's this new thing,
it's of course clinical trials,
so we don't know what's gonna happen with it,
but, it's a bit of glimmer of a hope,
you know, and so we talked about it and we thought
we might as well take the chance and see what could happen
cause we had no idea what the next steps were anyway.
So, we were explained to explain about it,
very well different by doctors
and everyone involved with the trial.
And, they're able to kind of give us assurance that
this could be a very viable next step for us
so we decided to go forward with it.
- So there's also the idea that it might not work,
I mean, so how important was you to take part anyway
just in the idea that maybe it could work
but maybe whatever they learned
might help other people as well.
- Yeah, so everyone involved was really good
about explaining that to us
and saying you know,
we have no idea what's gonna happen.
I mean we have an idea but,
you know, it could either,
nothing could happen or you could get a good recovery.
But, like I said I mean,
at this point we knew that I was in a situation where
with the level of trauma that happened to my neck where
I wasn't expected to get a lot of recovery anyway.
So we figured that I was in the perfect range where
I was kind of like the best of the worst
that's what kept being told about me,
It's like, you know I was in a worst case scenario but
I was young and athletic and had the ability to
have a high ceiling and a lot of potential for recovery.
So when this came to us we were like
okay, might as well try everything we can
- Best of the worst I don't think that's a category
anyone ever wants to be in, isn't it?
How much time, yeah I know that there was this
kind of a very time sensitive decision,
so how much time did you have to really decide?
- So the actual surgery had to happen
within 30 days of my injury,
so our timetable was about 30 days,
but on top of that we had to actually apply to get it
and actually qualify for the trial.
So there was a lot of steps between then and the surgery,
so, while we had 30 days it was kinda more of
a time crunch than that but,
there was still enough time to think about it
I mean, I wasn't doing anything else,
so we were able to all sit there and
soak in all the information and really learn about
all sorts of different things about it,
and took our time and making the decision
- Once you'd had the surgery, the procedure,
talk about the recovery what happened afterwards?
- So initially, I mean the surgery wasn't too bad,
It was just a day recovery in bed,
but then after that I really started beginning my
actual physical rehabilitation
and just kinda went to work every day
and we knew that while
the surgery kind of helped stimulate recovery,
it was also dependent on how much work I put into it.
And so it was just going to PT
and occupational therapy every day
and working as hard as I can
to try and get as much recovery as I could.
So, I spent the next five and a half months
in the hospital as an inpatient
and just going through different therapies every day.
- Yeah I saw you at physical therapy
I saw how hard you were working and just how,
painful it seemed and how difficult
but I mean you really stuck with it.
At the time of the accident you were
on a scholarship to Cal Poly,
football scholarship to Cal Poly.
What's happened since then?
- So, one thing I really worked hard for in the hospital was
achieving my goal of going back to school,
and the original goal was Cal Poly,
obviously I couldn't play football anymore
but I was still pretty involved with the team,
at least in my earlier years
I was going into the locker room with them
and beat on the side up with them.
So it was really great having the support
of the team there still.
And then, in regards to actually going to school,
I took a year off,
gap year ended up going to school the following year,
and actually ended up changing my major
and that came out of the trial,
in learning all the information I did about Stem cells
and research and science and everything like that
it kinda changed my mind on I want to go to study
because originally I would just apply it as a
mechanical engineer just thinking okay,
I don't really know what I wanna do,
but I think I could be an engineer,
but I ended up switching it to being a biomedical engineer.
So it kind of gave me a new path
which is interesting and really lucky.
- [Kelvin] Are you enjoying it?
- I am, I am going to my fourth year now
so final stretch,
I know real world coming up
so not quite looking forward to that but,
it's been a lot of fun and a great experience.
- I think if you've got through this
the real world really won't hold
too many challenges for you.
So since you're actually you and your family
both I've all become kind of advocates
for Stem cell research, how important has that been for you?
- Yeah, I mean I'm a big proponent of Stem cell research
in any sort of science,
I think that you know,
we might as well try anything we can
to help with people that are
in a situation similar to mine,
I've seen firsthand, not to see myself
but another patient advocates,
what great things Stem cells can do for people so,
I'm all for it I mean as much as could do help,
I mean, it's the least I can do for all self for me.
- And you're really a pioneer
I mean, one of the first people ever to try this approach,
talk about that role.
How does that feel to you being a pioneer
in something like this?
- I don't think it's quite hit me,
I don't know if it'll ever quite hit me,
you know the gravity of it but,
what I am thankful for
is all the hard work people put into it to get into that.
While I was one of the first people
to actually receive the Stem cells,
I feel like all the work that went into it
and I'm just a small role in the big picture,
you know all the researchers and scientists
the years it took to get to the point where
it can actually be injected into me is quite humbling.
- Small role but a crucial role
with I mean you're the end user
so, that's what this has been all about.
So how are you today?
Talk about your life today.
- Yeah, so like I said I'm going on my fourth year now,
I'm really enjoying myself
I'm able to live independently,
something that wasn't originally fair to realistic,
due to my level of function
but I'm able to go through my day to day life,
I live with roommates and
live a pretty regular college life and I have
a lot of people to thank for that but,
you know, CIRM and Stem cells is up there because,
I didn't know what kind of recovery I would achieve but,
I definitely out shine expectations
and I think part of that is the trial
and part of that is all the hard work that goes into it.
- Great Jake, thank you so much for joining us
and for sharing your story with us.
- Yes, thank you, Kevin.
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