Feelin Good - The Determination of a West Michigan Family

Episode Transcript

Speaker 1 (00:00):
We do it twice a morning, because feeling good is
just the best start to a weekend. Right on a Friday,
this is an especially beautiful one thanks to the determination
of one West Michigan family. A couple of parents in
Byron Center have turned a very rare diagnosis for their
son into a mission of awareness. Brian and Jenna Jobin

(00:20):
welcome to their second son, Brandon, back in June of
last year, but knew almost right away there was something wrong.
While Brandon arrived right on schedule, he showed signs of
a premature baby. Doctors ran test after test with not
a lot of answers until they looked at his genetics
and found a very rare neurological disorder called Pura syndrome.

(00:41):
He's missing the pura protein in his fifth chromosome, according
to dad, leads to things like low muscle tone, floppiness,
he could struggle with vision, talking, and a very very
high chance of epilepsy as he gets older. And while
this may be terrifying for parents, very understandably for these parents,
they have used it at is the mission of awareness.

(01:04):
They said. Pure syndrome was discovered only about eleven years ago,
and now the family is working towards awareness in a
big way. In fact, the Michigan Senate just adopted a
resolution yesterday that will make October twenty third as Pure
Syndrome Awareness Day, and the Djobins hope state recognition creates

(01:24):
a ripple effect, even two more people typing pure syndrome
and two more people on top of that, talking about
it at dinner that night. That is the goal, the
Jobins Tellwood TV, and awareness is helping other families just
like theirs, feel a lot less alone and the blessing
of finding new strength and.

Speaker 2 (01:42):
More people will know about Perah. I know about the
uniqueness of his condition, and it just helps that you
know everyone's unique and it just shines light on something different.
He also shows me that I have incredible strength and
that we can get through this together.

Speaker 3 (01:57):
Pure syndrome isn't going to define who Brandon is. It's
part of his life and he's going to live the
best possible life. Pure babies, pure kids are angels. They
are happy and joyful and they just need a little help.

Speaker 2 (02:09):
Man.

Speaker 1 (02:10):
Brandon got a couple of really good parents, didn't he.
I've got this story up if you love to learn
more these Byron Center parents are just phenomenal. West Michigan
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