>>> WELCOME BACK, EVERYBODY.
WE ALL KNOW RICHARD ENGEL AS A FEARLESS NBC CORRESPONDENT.S A
FEARLESS NBC CORRESPONDENT. >> AND A REALLY GOOD FRIEND.
BUT TODAY HE IS HERE WITH HIS WIFE MARY AND LITTLE BOY HENRY
AND THEYLL TELL US ABOUT THE
COURAGE IT TAKES TO FACE A
DIFFERENT KIND OF CHALLENGE. WELL TALK TO THE WHOLE FAMILY
IN A MOMENT.
BUT FIRST, THEIR STORY IN THEIR
OWN WORDS.
OWN WORDS.
>> WOW, LOOK AT THAT.
>> WHEN HENRY WAS BORN, JUST
OVER TWO YEARS AGO, HE MADE OUR LIFE COMPLETE. AGO, HE MADE OUR
LIFE COMPLETE.
THE SWEETEST, HAPPIEST BOY. BUT ALMOST RIGHT AWAY, SOMETHING
DIDNT --
DIDNT --
>> THE PROBLEM WAS HENRY WASNT
REALLY PROGRESSING.
HE WASNT SITTING UP WHEN HE
SHOULD.
HE WASNT CLAPPING HIS HANDS
WHEN HE SHOULD.
WE WENT TO EVERY DOCTOR WE COULD FIND.NT TO EVERY DOCTOR WE COULD
FIND.
>> CARDIOLOGISTS.
>> SIGHT, BLOOD TESTS.
>> GASTROENTEROLOGIST.
>> EVERYBODY.
IT WAS A MYSTERY.
AND WE THOUGHT, WELL, THERE ARE
LATE BLOOMERS.
WE DECIDED TO DO A FULL GENETIC
SCAN.
THE RESULTS CAME IN LAST
SEPTEMBER WHILE I WAS WAS TROOPS IN SOUTH KOREA WHEN THE CONVOYPS
IN SOUTH KOREA WHEN THE CONVOY PULLED OVER.
PULLED OVER.
SO I CALLED THE DOCTOR AND HE
SAID, WE FOUND SOMETHING AND ITS VERY, VERY SEVERE.NG AND
ITS VERY, VERY SEVERE. ITS LIFE LONG, NOT TREATABLE.
I WAS IN THE STATE OF SHOCK.
I GOT BACK IN THE CONVOY, LIKE
SHAKING.
SHAKING.
IT WAS THE WORST DAY OF MY LIFE. >> HENRY, WITH A SERIOUS GENETIC
DISORDERS.
DISORDERS.
FOR BOYS, ITS VERY RARE AND FOR NOW, UNTREATABLE.Y RARE AND FOR
NOW, UNTREATABLE.
I CALLED YOU AND I SAID WE HAVE
THE RESULT, AND I SAID, ITS NOT
GOOD.
ITS NOT JUST DELAY, IT MEANS
LIFE LONG, PERMANENT,
UNTREATABLE PHYSICAL AND
INTELLECTUAL IMPAIRMENT. AND YOU --AL IMPAIRMENT.
AND YOU -- >> YEAH, I JUST SAID NO, NO, NO,
NO, NO.
NO, NO. >> UNFORTUNATELY, THE MORE WE
LEARNED ABOUT IT, THE WORSE THE
NEWS GOT.
NEWS GOT. DOCTORS HAVE TOLD US HENRY WILL
LIKELY NEVER WALK, TALK, DRESS
HIMSELF OR HAVE THE MENTAL
CAPACITY BEYOND A TODDLER. AND THAT HEALTH PROBLEMS ARE
LIKELY COMING AS WELL.
>> KIDS WITH THIS MUTATION TEND
TO HAVE EPILEPSY OR SEIZURES OF
SOME KIND.
SOME KIND.
>> BUT HES GENERALLY QUITE
HAPPY.
BUT IT COULD BE A DARKER ROAD
AHEAD.
THE DOCS HAVE SAID THAT HE COULD
GET RIGID.
ITS A DOOR I -- CORRIDOR I
DONT WANT TO GO DOWN. NO MATTER WHAT HAPPENS, WE WANT
HENRY TO KNOW HES LOVED.
HE GETS BACK WHAT WE PUT IN AND
MORE.
MORE.
PLAY HAS A PURPOSE. WE TRY TO KEEP HIM MOVING,
HOPING EVERY TINY CRAWL MAKES
HIS MUSCLES STRONGER.
GOOD JOB, GOOD JOB.
EVERY MOMENT CAN HELP DEVELOP A
SKILL.
SKILL.
EVEN LUNCH.
TO GET HIM A LITTLE BIT OF THAT
DEXTERITY.
HE HAS PHYSIOTHERAPY DAILY, AND HOSPITAL VISITS TWICE A WEEK TO
STIMULATE HIS SENSES.
>> BASICALLY, IM HIS MANAGER
FOR THAT.
FOR THAT. AND CHEERLEADER.
AND CHEERLEADER. IT GIVES ME PURPOSE.
ITS IMPORTANT.
ITS IMPORTANT.
AND I SEE IT HELPING HIM.
>> BUT THIS STORY MAY HAVE A
HAPPY ENDING.
FOR HENRY AND MANY OTHER
CHILDREN.
BECAUSE THERE IS HOPE THAT HENRY
HOLDS THE KEY TO A TREATMENT.
A LOT DEPENDS ON THE WORK BEING DONE BY DR. ZOGBY AT THE DUNCAN
INSTITUTE AT THE TEXAS
CHILDRENS HOSPITAL.
CHILDRENS HOSPITAL. >> HENRYS MUTATION IS UNIQUE IN
THE WORLD, BUT BECAUSE ITS
UNIQUE IS WHAT MAKES IT SO
VALUABLE.
VALUABLE.
SOMETIMES WHEN THE RAREST THING YOU CAN LEARN THE MOST.ST THING
YOU CAN LEARN THE MOST. >> DOCTOR ZOGBYS LAB HAS
COLLECTED HENRYS CELLS AND THE
GOAL IS TO FIND A WAY TO BOOST
THE PROTEIN THAT IS ESSENTIAL
FOR BRAIN FUNCTION.
>> SO WERE USING HENRYS CELLS
TO MONITOR THE LEVEL OF THE
PROTEIN.
PROTEIN.
>> Reporter: DR. ZOGBY SAID IF
SHE CAN BOOST THE PROTEIN SAFETY IT WOULD BE A BREAKTHROUGH FORTY
IT WOULD BE A BREAKTHROUGH FOR HENRY AND FOR MANY CHILDREN.
>> WE KNOW TODAY THERE ARE
HUNDREDS OF GENES THAT CAN CAUSE
AUTISM OR INTELLECTUAL
DISABILITY OR COMPLEX
PSYCHIATRIC DISORDERS.
PSYCHIATRIC DISORDERS. USING HENRYS CELLS TO STUDY
RHETTS SYNDROME, ONCE
SUCCESSFUL IT CAN BE APPLIED TO
THE DISEASES.
THE DISEASES. >> WHILE WE WAIT FOR SCIENTIFIC
PROGRESS, WE TRY TO MAKE HENRYS
LIFE AS NORMAL AS POSSIBLE.
>> ITS HARD.
SOMETIMES I REALLY HAVE TO GET
MYSELF UP.
MYSELF UP.
I DONT WANT TO SEE A
9-MONTH-OLD -- ITS EASY TO GET
LOST IN IT. >> BUT THERE ARE ALSO MOMENTS OF
JOY AND TOGETHERNESS.
ITS MADE OUR RELATIONSHIP
STRONGER, ACTUALLY.
STRONGER, ACTUALLY. AND WERE ALL WEVE GOT.
WERE ALL HES GOT RIGHT NOW.
SO WE NEED TO BE A TEAM.
>> AND RICHARD, MARY, HENRY,
WELCOME.
WELCOME.
FIRST, WE LOVE YOU.
>> THANK YOU.
>> WE LOVE YOU SO MUCH. AND WE KNOW YOURE A COURAGEOUS
GUY, RICHARD, WE HAVE SEEN YOU
OUT IN THE FIELDS.
BUT THIS IS A DIFFERENT KIND OF
COURAGE.
COURAGE.
>> WELL, ITS NOT A STORY THAT ANYBODY WANTS TO TELL AND IT WAS
VERY DIFFICULT FOR US.
BUT WE WANTED TO RAISE AWARENESS
AWARENESS, TO MAKE OTHER FAMILIES WITH SPECIAL NEEDS
CHILDREN, CHILDREN WHO ARE
CHALLENGING KNOW THAT THEYRE
ALONE.
ALONE.
IT CAN FEEL VERY LONELY WHEN YOU
GO DOWN THE STREET AND YOU SEE
OTHER CHILDREN BEHAVING
QUOTE/UNQUOTE NORMALLY AND
KNOWING THAT HIS LIFE AND OUR
LIFE IS NEVER GOING TO BE LIKE
AND WE WANTED TO POINT OUT THE
RESEARCH.
AND THAT THERE IS HOPE.
AND MAYBE HE CAN CONTRIBUTE TO
THAT PROGRESS.
>> WELL, HENRY, HES SO SPECIAL.
WE LOVE UP ON HENRY A LITTLE BIT
BEFORE WE CAME ON HERE AND MARY,
YOURE DOING -- BOTH OF YOU ARE JUST POURING YOUR WHOLE HEARTS
AND EVERYTHING INTO THIS BOY.
BUT IT MUST HAVE BEEN HARD TO
THINK ABOUT LIKE COMING OUT
PUBLICLY AND TALKING ABOUT IT
BECAUSE ITS SO RAW.
>> ITS PAINFUL AND VERY
PERSONAL.
PERSONAL.
BUT WE APPRECIATE BEING ABLE TO
DO IT.
AND HOPEFULLY LIKE YOU SAID ITS
LONELY. OTHER PEOPLE MAYBE WILL SEE THIS
AND FEEL LESS ALONE AND WE WILL
TOO.
TOO. YOU KNOW, AND WHAT THEYRE DOING
AT THE TEXAS CHILDRENS HOSPITAL
IS REALLY AMAZING AND IT GIVES
US HOPE.
US HOPE.
IT GETS US THROUGH EVERY DAY.
>> CAN WE TALK ABOUT THAT FOR A
MINUTE BECAUSE I LOVE IN THE
PIECE YOU SAID, WAIT A MINUTE,
THIS STORY MAY HAVE A HAPPY
ENDING.
SO WHAT ARE YOU LOOKING FOR,
WHAT ARE YOU HOPING FOR?
>> SO HIS MUTATION IS
POTENTIALLY ONE OF A KIND.
THE DOCTORS SAID ITS FIRST ONE IN EXISTENCE.AID ITS FIRST ONE
IN EXISTENCE. AND WHILE THATS OBVIOUSLY VERY
CHALLENGING AND DIFFICULT FOR US
AND CERTAINLY FOR HIM, IN THAT
RARITY THERE MAY BE THE KEY TO
HIS OWN TREATMENT AND A
TREATMENT TO MANY OTHERS.
SO WHAT DR. ZOGBY IS TRYING TO
DO IS FIGURE OUT A WAY TO BOOST
THIS PROTEIN THAT HE DOESNT
HAVE ENOUGH OF.
IF SHE CAN FIGURE OUT HOW TO DO
THAT SAFELY, IT COULD BE APPLIED
TO A WHOLE HOST OF OTHER GENETIC DISORDERS SO IT COULD BE AT THEC
DISORDERS SO IT COULD BE AT THE END OF THE DAY HE HAS A KEY TO
HELPING HIMSELF AND POTENTIALLY
MANY OTHERS.
MANY OTHERS. BUT LOOK, WE HAVE TO GET THERE
FIRST.
FIRST.
THEYRE WORKING ON THE RESEARCH.
THEYRE HARD AT WORK RIGHT NOW.
THATS WHAT WERE DRIVING FOR.
>> WHEN YOU TALK ABOUT HENRY, HE
IS HAPPY.
A LITTLE SMILE.
>> SUCH A GOOD BOY.
WHAT YOU GUYS HAVE BEEN DOING
AND THE THERAPY, ITS HELPING.
>> IT IS HELPING.
OUR MILESTONES ARE NOT NECESSARILY MILESTONES.
NECESSARILY MILESTONES. WE CALL THEM INCH STONES.
SO HE DOESNT -- YOU KNOW, ITS
SLOW, BUT THERE IS PROGRESS.
AND HE WORKS REALLY HARD AND WE
HAVE FUN.
HAVE FUN.
WE MAKE IT FUN. >> WHERE DO YOU GUYS -- LASTLY,
WHERE DO YOU FIND YOUR STRENGTH?
IM LOOKING AT TWO PEOPLE AND I
KNOW -- I CAN SEE HOW STRONG YOU
ARE.
ARE.
WHERE DOES IT COME FROM?
>> FROM HENRY.
YEAH.
I MEAN, YOU CANT NOT GET UP IN THE MORNING.CANT NOT GET UP IN
THE MORNING.
YOU JUST HAVE TO GET UP AND GO
AND DO IT AND TAKE CARE OF HIM.
HES RARING TO GO.
YOU KNOW? SO --NOW?
SO --
>> WE GET BACK WHAT WE PUT IN. YOU KNOW, WERE HOLDING HIM AND
CUDDLING HIM AND HE SMILES BACK,
WHAT ARE YOU GOING TO DO?
YOU HAVE TO TRY HARDER AND GIVE
IT EVERYTHING YOU CAN.
I KNOW OTHER FAMILIES HAVE BEEN
THROUGH THIS KIND OF THING
BEFORE.
WE CAN LEARN FROM THEM AND TAKE SOMETHING FROM THEIR EXPERIENCE
AND THEIR STRENGTH AS WELL.
>> IF PEOPLE WANT TO HELP, GUYS,
WHAT SHOULD THEY DO?
WE LOVE YOU, RICHARD.
THEY KNOW YOU AND IT FEELS LIKE
ITS IN THE FAMILY.
>> I APPRECIATE THAT.
WE SAY THIS AT THE NETWORK A
LOT, FAMILY, AND THANK YOU TO
YOU BOTH.
YOU BOTH.
IT DOES FEEL LIKE A FAMILY. WERE PUTTING -- THERES ALY.
WERE PUTTING -- THERES A WEBSITE AT THE RESEARCH
INSTITUTE, THAT THEY HAVE PUT
TOGETHER.
TOGETHER.
IT TALKS ABOUT THE WORK THATS
BEING DONE. WE HAVE A LINK TO THAT.
I HAVE BEEN TWEETING IT OUT THIS
MORNING.
MORNING.
IT SHOULD BE ON TODAY.COM NOW OR VERY SOON.BE ON TODAY.COM NOW OR
VERY SOON.
>> WE LOVE YOU, GUYS.
THANK YOU SO MUCH.