Gabby's Great Adventure (Neonatal Progeroid Syndrome)

do you two want to see what it looks

like before we start if you look

right here you can see a little tv

screen

who's that right there

[Music]

this first question's for you gabby are

you ready okay

who is this saga

what's your brother like bubble bottle

i love you are you interested you're

gonna sing

what do you want to sing i need

she's so much fun to watch i will put

her in bed too

go to bed and she'll bounce around and

just perform

in her bed for a good two hours and it's

just fun to sit there on the monitor and

watch to see what she's going to do

would it be correct to describe gabby as

happy yes

yes and that was very important because

we wanted to make sure we were gonna

have a happy child

that was our that was what we were

praying for and

we got it

glad you got fun let's kick the monkeys

one more time

she's a wiggle worm and thank god she is

so little so i can manage her

and she's not necessarily throwing

around wait can you sit up

no please

gaby have a mind of her room yes she

does

and it's fun to watch her little plane

and what she's thinking what makes her

tick

and she's got it's fun to watch her

because you never know what you're going

to get

you sit down no

gabby is it okay if i ask you and your

brother three questions

when gabby was in here with her brother

she would go to the door

and pretend like she was opening it

because it annoyed her brother

but she wouldn't open it she would just

touch the handle and laugh yes does she

like the teasing

yes she likes to tease everybody

and she no she can get away with it so

when i say inside voice to her because

she's

this little loud person um she thinks

it's funny when i say inside voice and

then she

is louder so it sort of backfires but

she is a prankster and you can't help

but laugh

why is she able to get away with

anything

because she's gaby

she's just too cute you know she it

happens

gabby was born with neonatal prodroid

syndrome

it is a very rare syndrome at the time

we were given that diagnosis there was

70 cases since 1970. what do you think

is the best thing about your sister

that i i play with her and she plays

with me

there's not a lot of literature which

was upsetting

at the time for us because the

literature that we were going by was one

that was

for one of the other

genetic mutations under the name

neonatal protroid syndrome

so um one thing that broke my heart was

when we left

the literature that we were given was

the average lifespan was

seven months old and um

that i mean any mom that just had a baby

reads that like

hormones are not like you're heartbroken

can you say hi hi good to see you tell

chris what we were just doing

what were we doing my name is monkey

can you say we were watering the plant

okay

water plants yeah you did a good job

she's very smart so she can read

um words individually but she

if you ask her questions it's harder i

don't think she

you know understands everything just yet

but

um i think i say that but she could just

be fooling us

all too i don't know what do you like

more

dogs or cats

most you like rabbits

i love rabbits too

rabbits are a cool animal

[Music]

rabbits are the best it's perfect

again i don't know where

what do you do when you're not sure what

gabby says i tried to repeat it when she

was younger she used to get really

frustrated and would start crying

but now she'll repeat something over and

over again until i repeat it back to her

and if it's wrong then she will

say no and keep going so i've got

i gotta pick up on it right away or else

brandon for the long haul i have another

question for you

oh are you ready for it

what do you like more the color green or

the color blue

[Music]

my color

you like colorful rabbits

yes

rabbits are the best do you like

thinking about rabbits

my pleasure your pleasure

may feel good baby

baby really

that's so cool when she's just so

good and bubby is your boy

i didn't know that

thank you for telling me that and you

like tummy

that's so cool the baby is coming

she's got a big repertoire of sayings

and she's memorizes things really

quickly

gabby gabby

has being gabby's dad changed how you

view the world

absolutely yeah how so i think

a couple different ways one you know

when gabby was born obviously

she's got some challenges and some some

things that

uh you know make things a little harder

for her but i think it just puts things

in perspective for you

you know like what's really important

what's wrong you want to play with

numbers

okay can i put her down yeah of course

yeah and i just think perspective right

so at the end of the day

uh it makes you realize what the most

important things are with life

you know and that's love how does

neonatal

project syndrome impact gabby

so it makes it so she does not have um

any fat she doesn't have teeth either

um it makes her have thinner bones

more brittle bones she was born with a

congenital knee defect that we've had a

couple surgeries on

but other than that she

is a smart little girl sit down

let me sit down okay do you take care of

your sister

yeah how do you feel when you take care

of your sister

um i feel

excited

gabby were you just making a silly face

at me

when

what was it like when gabby was first

born it was hard we weren't given a

diagnosis

we um at

20 weeks we found out there was

something wrong with our baby we saw an

uh skull abnormality we potentially saw

a heart issue and then she was small so

um we went and did all the tests the

doctors weren't able to tell us what was

going on so

you know when i had her

um we didn't know there's a lot of

things in

that are taken out of your control and

you don't know where to turn or what to

do and sometimes

answers can't get provided for you so

you search for the things that

you can control and that's how do you

love your kids and how do they love you

back and

i think that that's changed me

enormously

and then mommy i love mama

why do you love mommy mom

daddy daddy i love you gummy gummy i

love you

i love you no i love you more

every day is something new so every day

is a new milestone that she might hit

every day is a new thing that she's

learned every day is a

a new adventure can you spell cat can

you show chris how you spell cats

small cats spell cat

cat can you spell the word cat

i think i'm most proud of gabby for

i mean i could say that i'm proud of her

for overcoming all the surgeries she's

had and the challenges that she's had

but

i think i'm most proud of her for just

the basic common things that you would

be proud of any kid for

that she loves her family that she's a

good sister

he is able to be affectionate

uh she's able to listen uh she takes

interest in things hey man

can you spy can you spell hop

ha hack

good job you got the hop

amazing

you're so smart

i think spidey