Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Detroit Christmas Station one hundred point three w n C.
Speaker 2 (00:03):
Jay Towers, Allison Chelsea, day before Thanksgiving. Welcome to the
show called thirty three degrees. It is time for Jays Juniors.
Speaker 3 (00:13):
Hello, Hey Heather, Yes, Hey.
Speaker 1 (00:15):
She Towers at WNIC.
Speaker 3 (00:17):
Hi.
Speaker 1 (00:18):
Hello, how are you?
Speaker 4 (00:19):
I am good?
Speaker 1 (00:20):
Thank you? Hi Heather.
Speaker 3 (00:22):
Hi guy.
Speaker 1 (00:23):
Can you tell us a little bit about Ruby?
Speaker 2 (00:25):
Because I know Ruby is seven and reading the story,
I just thought we'd get a better understanding from you.
Speaker 3 (00:31):
Well, I guess our first indication that there was something
wrong were her eyes. When she was younger, about five
and a half weeks old. I took her to our pediatrician.
He sent me directly to a specialist ophthalmologist specialist, and
she was diagnosed with congenital coma.
Speaker 4 (00:50):
So for the first three years it was really just
her eyes.
Speaker 3 (00:53):
She has low muscle.
Speaker 4 (00:55):
Tone and it's the late development.
Speaker 3 (00:58):
So she did a lot of PT and.
Speaker 4 (01:00):
OT and about four years old we finally got more
genetic testing gun and that's when they found dis josty syndrome.
Speaker 1 (01:09):
So it's a it's a genetic disorder, right, It's.
Speaker 3 (01:11):
A genetic disorder that.
Speaker 4 (01:13):
I believe was just a spontaneous mutation.
Speaker 3 (01:17):
Yeah, it's a disorder of the one tp.
Speaker 4 (01:20):
R one gene or something Crimson, lots.
Speaker 3 (01:23):
Of growth, motor delay. She doesn't walk.
Speaker 4 (01:28):
She's just now started slowly crawling, so to get around
she scoots.
Speaker 3 (01:33):
Or uses a wheelchair at seven.
Speaker 4 (01:35):
At seven, Yeah, but she's had a lot of surgeries
and procedures because of the cold cooma, trying to keep
the pressure under control so she didn't lose more sight.
I was gonna say, how is her vision, Well, the
one the one eye is.
Speaker 3 (01:49):
Much worse than the other as far as the glaucoma.
Speaker 4 (01:52):
Pressure is concerned. But back in March, she woke up
one morning and would not open her eyes.
Speaker 3 (01:58):
That went on for a couple Actually, I took her
in the doctor that day.
Speaker 4 (02:01):
She was in the diagnose, but it took her in
a couple of days later because it was getting worse.
Was screaming out in pain, couldn't sleep, couldn't open her eyes,
and as it turns out, she had a detached retina
in that one.
Speaker 3 (02:14):
So it was very.
Speaker 4 (02:15):
Traumatizing, traumatizing, extremely painful.
Speaker 3 (02:18):
She was in and out of the hospital.
Speaker 4 (02:19):
For two weeks with three surgeries.
Speaker 3 (02:23):
She has artificial stints to drain. The pressure is the
fluid from the glaucoma, and they got clogged up with blood.
Speaker 4 (02:30):
And blood clots from the bleeding, and.
Speaker 3 (02:32):
So that was caused her pressure to spike.
Speaker 4 (02:36):
Skyrocket, and that's what was causing the extreme pain because
normally with the detached retina, you don't necessarily have the pain,
but it was the glaucoma pressure causing the extreme pain,
and so it.
Speaker 3 (02:46):
Took them three procedures to get the bleeding to stop.
She is just now, I feel like, recovering from that.
She couldn't really open her eyes or deal with much
like at all.
Speaker 4 (03:00):
And she's always been photo sensitive because one.
Speaker 3 (03:03):
Of the eye conditions she has is a lack or
the eye wrists of the eye.
Speaker 4 (03:08):
Which is what causes your eyes to contract and like
react to light, and so she basically walks around like
you would feel as if you walked out of the
doctor's office after having your eye dilates all the time.
Speaker 3 (03:20):
So she's always been photo sensitive.
Speaker 4 (03:21):
But she's been not able to deal with any light
for the most part.
Speaker 3 (03:25):
So she had a steroid injection of the eye a few.
Speaker 4 (03:29):
Weeks ago, which has taken the information done and she
is just now being able to really open. I probably
have seen her eyeball for the first time since March.
Speaker 3 (03:38):
Wow.
Speaker 1 (03:38):
So then what is what is day to day like though?
I mean, is there is there school.
Speaker 3 (03:43):
Or or.
Speaker 1 (03:44):
She is in school.
Speaker 3 (03:46):
She's actually in a general ed classroom for.
Speaker 1 (03:48):
The time being.
Speaker 4 (03:49):
I'm not sure how long that will last, but she
is in general ed classroom with a full time pair
of pro that assists her in all of her and need.
She doesn't have a lot of fine motor control as well,
so like writing is not really probably something she's going
to be able to do much. So they're trying to
find like talk to text programs and things like that
that she can utilize going forward to try to give
(04:11):
her a little more independence.
Speaker 1 (04:13):
And you have a looks like a big family, right
we do.
Speaker 4 (04:18):
She's our youngest of six, My oldest is twenty and
then she will be eight end of summer.
Speaker 1 (04:24):
So yeah, wow. So what are some of the things
that make you know, Ruby happy? I mean, what is she?
What is she like?
Speaker 4 (04:30):
She is the cutest little girl that we're looking at
the picture of her right now at what looks to
be a wedding and has her sunglasses on.
Speaker 3 (04:39):
And so fancy it was my parents' fiftieth wedding anniversary.
Like Ballerinol that we surprise them with wo So that.
Speaker 4 (04:47):
Was before the retinal detachment, so she was still happy outside. Unfortunately,
she didn't spend much time outside at all this summer
because of the photo sensitivity. But thankfully now since this
last procedure, she seems to be doing much better.
Speaker 3 (05:02):
So she loves school, loves school.
Speaker 4 (05:05):
She's an extremely.
Speaker 3 (05:06):
Social little girl. Everybody she meets just loves her. But
she's very famous in her school.
Speaker 1 (05:13):
Everybody, right, it sounds like, uh, it might be.
Speaker 2 (05:17):
It might be fun in December to get away for
our tenth Chase Juniors trip. We'd love to take you
in your family.
Speaker 3 (05:23):
Really really are you still there? Then? That's amazing, thank you.
Speaker 2 (05:30):
You know how Jay's Juniors works. I mean we we
pay for everything. I mean, you're on the Chase Juniors jet.
It's everything's included, hotel, airfare, spending.
Speaker 1 (05:37):
Money, food, park, the whole family. Yeah, everybody goes. It's
the vacation of a lifetime.
Speaker 3 (05:42):
Really, that's amazing. Thank you.
Speaker 2 (05:45):
And you think she'll be okay, I mean out, I
mean outside and stuff. You have protective eye gear and
all I do.
Speaker 3 (05:50):
Yeah, I think this left pro seadre. I'm so thankful
that I kind of I pushed for them to kind
of do something because she just wasn't Oh she wasn't
living life, really, she wasn't really able to participate in anything,
and so this seems to have really done the job. Yeah,
so thankful.
Speaker 4 (06:07):
Yeah, Oh my gosh.
Speaker 3 (06:08):
Yes, and I think it's the week of her birthday too.
Speaker 1 (06:12):
When is your birthday?
Speaker 3 (06:14):
Eight? Yes?
Speaker 1 (06:15):
Nice? Yeah, I love when stuff works out like that.
Speaker 4 (06:19):
I've celebrated my birthday at Disney World a couple of times,
and it's the way to do it. Yeah right, We're
going to go to the seating rink, but I think
that's sounds much better.
Speaker 1 (06:29):
Yeah right.
Speaker 2 (06:29):
Of course, we really want to thank our partners that
make all of our Jay's Juniors trips so special every
single year.
Speaker 3 (06:36):
Jersey, Mike's, Planet, Fitness, Kroger Imagine Moscow, Canterbury Village.
Speaker 1 (06:42):
Our charitable partner, Angels of Hope. Your support means the
world to us.
Speaker 3 (06:46):
Awesome, thank you so much.
Speaker 1 (06:48):
You're welcome. We'll talk to you soon.
Speaker 3 (06:49):
Alrighty right,
Detroit Christmas Station one hundred point three w n C.
Speaker 2 (00:03):
Jay Towers, Allison Chelsea, day before Thanksgiving. Welcome to the
show called thirty three degrees. It is time for Jays Juniors.
Speaker 3 (00:13):
Hello, Hey Heather, Yes, Hey.
Speaker 1 (00:15):
She Towers at WNIC.
Speaker 3 (00:17):
Hi.
Speaker 1 (00:18):
Hello, how are you?
Speaker 4 (00:19):
I am good?
Speaker 1 (00:20):
Thank you? Hi Heather.
Speaker 3 (00:22):
Hi guy.
Speaker 1 (00:23):
Can you tell us a little bit about Ruby?
Speaker 2 (00:25):
Because I know Ruby is seven and reading the story,
I just thought we'd get a better understanding from you.
Speaker 3 (00:31):
Well, I guess our first indication that there was something
wrong were her eyes. When she was younger, about five
and a half weeks old. I took her to our pediatrician.
He sent me directly to a specialist ophthalmologist specialist, and
she was diagnosed with congenital coma.
Speaker 4 (00:50):
So for the first three years it was really just
her eyes.
Speaker 3 (00:53):
She has low muscle.
Speaker 4 (00:55):
Tone and it's the late development.
Speaker 3 (00:58):
So she did a lot of PT and.
Speaker 4 (01:00):
OT and about four years old we finally got more
genetic testing gun and that's when they found dis josty syndrome.
Speaker 1 (01:09):
So it's a it's a genetic disorder, right, It's.
Speaker 3 (01:11):
A genetic disorder that.
Speaker 4 (01:13):
I believe was just a spontaneous mutation.
Speaker 3 (01:17):
Yeah, it's a disorder of the one tp.
Speaker 4 (01:20):
R one gene or something Crimson, lots.
Speaker 3 (01:23):
Of growth, motor delay. She doesn't walk.
Speaker 4 (01:28):
She's just now started slowly crawling, so to get around
she scoots.
Speaker 3 (01:33):
Or uses a wheelchair at seven.
Speaker 4 (01:35):
At seven, Yeah, but she's had a lot of surgeries
and procedures because of the cold cooma, trying to keep
the pressure under control so she didn't lose more sight.
I was gonna say, how is her vision, Well, the
one the one eye is.
Speaker 3 (01:49):
Much worse than the other as far as the glaucoma.
Speaker 4 (01:52):
Pressure is concerned. But back in March, she woke up
one morning and would not open her eyes.
Speaker 3 (01:58):
That went on for a couple Actually, I took her
in the doctor that day.
Speaker 4 (02:01):
She was in the diagnose, but it took her in
a couple of days later because it was getting worse.
Was screaming out in pain, couldn't sleep, couldn't open her eyes,
and as it turns out, she had a detached retina
in that one.
Speaker 3 (02:14):
So it was very.
Speaker 4 (02:15):
Traumatizing, traumatizing, extremely painful.
Speaker 3 (02:18):
She was in and out of the hospital.
Speaker 4 (02:19):
For two weeks with three surgeries.
Speaker 3 (02:23):
She has artificial stints to drain. The pressure is the
fluid from the glaucoma, and they got clogged up with blood.
Speaker 4 (02:30):
And blood clots from the bleeding, and.
Speaker 3 (02:32):
So that was caused her pressure to spike.
Speaker 4 (02:36):
Skyrocket, and that's what was causing the extreme pain because
normally with the detached retina, you don't necessarily have the pain,
but it was the glaucoma pressure causing the extreme pain,
and so it.
Speaker 3 (02:46):
Took them three procedures to get the bleeding to stop.
She is just now, I feel like, recovering from that.
She couldn't really open her eyes or deal with much
like at all.
Speaker 4 (03:00):
And she's always been photo sensitive because one.
Speaker 3 (03:03):
Of the eye conditions she has is a lack or
the eye wrists of the eye.
Speaker 4 (03:08):
Which is what causes your eyes to contract and like
react to light, and so she basically walks around like
you would feel as if you walked out of the
doctor's office after having your eye dilates all the time.
Speaker 3 (03:20):
So she's always been photo sensitive.
Speaker 4 (03:21):
But she's been not able to deal with any light
for the most part.
Speaker 3 (03:25):
So she had a steroid injection of the eye a few.
Speaker 4 (03:29):
Weeks ago, which has taken the information done and she
is just now being able to really open. I probably
have seen her eyeball for the first time since March.
Speaker 3 (03:38):
Wow.
Speaker 1 (03:38):
So then what is what is day to day like though?
I mean, is there is there school.
Speaker 3 (03:43):
Or or.
Speaker 1 (03:44):
She is in school.
Speaker 3 (03:46):
She's actually in a general ed classroom for.
Speaker 1 (03:48):
The time being.
Speaker 4 (03:49):
I'm not sure how long that will last, but she
is in general ed classroom with a full time pair
of pro that assists her in all of her and need.
She doesn't have a lot of fine motor control as well,
so like writing is not really probably something she's going
to be able to do much. So they're trying to
find like talk to text programs and things like that
that she can utilize going forward to try to give
(04:11):
her a little more independence.
Speaker 1 (04:13):
And you have a looks like a big family, right
we do.
Speaker 4 (04:18):
She's our youngest of six, My oldest is twenty and
then she will be eight end of summer.
Speaker 1 (04:24):
So yeah, wow. So what are some of the things
that make you know, Ruby happy? I mean, what is she?
What is she like?
Speaker 4 (04:30):
She is the cutest little girl that we're looking at
the picture of her right now at what looks to
be a wedding and has her sunglasses on.
Speaker 3 (04:39):
And so fancy it was my parents' fiftieth wedding anniversary.
Like Ballerinol that we surprise them with wo So that.
Speaker 4 (04:47):
Was before the retinal detachment, so she was still happy outside. Unfortunately,
she didn't spend much time outside at all this summer
because of the photo sensitivity. But thankfully now since this
last procedure, she seems to be doing much better.
Speaker 3 (05:02):
So she loves school, loves school.
Speaker 4 (05:05):
She's an extremely.
Speaker 3 (05:06):
Social little girl. Everybody she meets just loves her. But
she's very famous in her school.
Speaker 1 (05:13):
Everybody, right, it sounds like, uh, it might be.
Speaker 2 (05:17):
It might be fun in December to get away for
our tenth Chase Juniors trip. We'd love to take you
in your family.
Speaker 3 (05:23):
Really really are you still there? Then? That's amazing, thank you.
Speaker 2 (05:30):
You know how Jay's Juniors works. I mean we we
pay for everything. I mean, you're on the Chase Juniors jet.
It's everything's included, hotel, airfare, spending.
Speaker 1 (05:37):
Money, food, park, the whole family. Yeah, everybody goes. It's
the vacation of a lifetime.
Speaker 3 (05:42):
Really, that's amazing. Thank you.
Speaker 2 (05:45):
And you think she'll be okay, I mean out, I
mean outside and stuff. You have protective eye gear and
all I do.
Speaker 3 (05:50):
Yeah, I think this left pro seadre. I'm so thankful
that I kind of I pushed for them to kind
of do something because she just wasn't Oh she wasn't
living life, really, she wasn't really able to participate in anything,
and so this seems to have really done the job. Yeah,
so thankful.
Speaker 4 (06:07):
Yeah, Oh my gosh.
Speaker 3 (06:08):
Yes, and I think it's the week of her birthday too.
Speaker 1 (06:12):
When is your birthday?
Speaker 3 (06:14):
Eight? Yes?
Speaker 1 (06:15):
Nice? Yeah, I love when stuff works out like that.
Speaker 4 (06:19):
I've celebrated my birthday at Disney World a couple of times,
and it's the way to do it. Yeah right, We're
going to go to the seating rink, but I think
that's sounds much better.
Speaker 1 (06:29):
Yeah right.
Speaker 2 (06:29):
Of course, we really want to thank our partners that
make all of our Jay's Juniors trips so special every
single year.
Speaker 3 (06:36):
Jersey, Mike's, Planet, Fitness, Kroger Imagine Moscow, Canterbury Village.
Speaker 1 (06:42):
Our charitable partner, Angels of Hope. Your support means the
world to us.
Speaker 3 (06:46):
Awesome, thank you so much.
Speaker 1 (06:48):
You're welcome. We'll talk to you soon.
Speaker 3 (06:49):
Alrighty right,
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