WING.
MELINA AND HER FAMILY ARE ON A CAMPAIGN TO RAISE AWARENESS AND MONEY FOR THE DISEASE.
♪ [CHEERS] ♪ ERIN: SHE SHOOTS, SHE SCORES.
>> GET THE BALL.
ERIN: WATCHING MELINA SPINAZOLA GIVE IT A ALL IN A GAME OF HOOPS, HE WILL NEVER NOTICE THIS WINDHAM EIGHT-YEAR-OLD SUFFERS FROM A RARE CONDITION.
>> IT IS DUBBED "THE WORST DISEASE YOU HAVE EVER HEARD OF." ERIN: MELINA HAS EPIDERMOLYSIS BULLOSA, OR E.B., A DISORDER WHERE THE SKIN IS AS DELICATE AS THE WING OF A BUTTERFLY AND
BLISTERS EASILY AND OFTEN.
JUST WALKING BRINGS PAINFUL SORES IN HER FEET.
KERRI: THERE IS A SAYING THAT YOU NOT KNOW WHAT IS UNDERNEATH THE BANDAGES.
IT IS COMPLETELY UNEXPECTED WHEN PEOPLE FIND OUT SOMETIMES.
THEY THINK SHE LIVES, MAYBE SHE HURT HER ANKLE.
>> A LITTLE BIT LOUDER.
♪ >> ERIN: THE DAY WE VISITED MELINA HASKELL, SHE WAS NOT ABLE TO STAND DURING MUSIC -- AT SCHOOL, SHE WAS NOT ABLE TO STAND DURING MUSIC.
SHE WAS HOPPING AROUND.
MELINA: I AM A BUNNY ON ONE FOOT.
THAT IS WHAT I AM ER.
ERIN: WRITING CAN BLISTER HER HAND, SO SOMEHOW SHE REQUIRES AN AIDE.
RUTH: I GOING TO START CRYING TEARS SHE IS AN AMAZING LITTLE GIRL.
ERIN: WHEN ONE BLISTER GOT WORSE, THEY WERE OFF ON A DAILY TRIP TO THE NURSE.
KATIE: SHE HAS A SPARKLE BUTTERFLY THAT TAKES HER AROUND.
IT IS NOT A WHEELCHAIR.
DO NOT CALL HIS DOCT-- IT THAT.
ERIN: MELINA HAS LEARNED TO TREAT HER WOUNDS WITH COCONUT OIL.
KERRI: IT WILL SPREAD, SO WE CAN UPDATE IT ON IT.
MELINA: IT IS A BAD SKIN DISEASE, AND YOU WANT IT.
MY FRIEND SAID I WANT YOU TO BE SO I CAN RIDE AROUND IN A WHEELCHAIR.
I AM LIKE YOU REALLY DO NOT WANT IT.
IT HURTS.
ERIN: WHEN SHE WAS DIAGNOSED TO SIX DAYS OLD, HER PARENTS WILL ONLY WANT IT 50,000 CHILDREN ARE BORN WITH TV EACH YEAR, A CONDITION SO RARE THAT DOCTORS WERE OFTEN AT A LOSS WHEN IT
CAME TO TREATING IT.
KERRI: BLISTERS ON HER FACE, NECK AT ALL TIMES, HER HANDS, HER ELBOWS, HER POOR DIAPER AREA WAS COVERED IN BLISTERS.
HER FEET WERE JUST ENGULFED IN BLISTERS.
LYSSES: MY INITIAL THOUGHT IS IT IS SO PAINFUL.
IT JUST BREAKS YOUR HEART TO SEE SOMETHING LIKE THAT.
ERIN: EVENTUALLY, THEY CONNECTED WITH AN EV MONSTER OF ONLINE -- E.B. MOMS’ GROUP ONLINE.
KERRI: I LEARNED MORE THERE THAN I DID AT ANY DOCTOR’S OFFICE.
ERIN: SHE WEARS DIFFERENT SHOES EACH DAY, AND MOM BLEACHES THEM AND INSPECTS EACH SHOE BEFORE BUYING THEM.
KERRI: EVERY SPOT TO MAKE SURE THERE IS NOTHING PROTRUDING AND IT IS ALL SOFT.
ERIN: WOUND CARE IS PART OF MELINA’S BEDTIME ROUTINE.
SCOUTS ARE MOVED, BLISTERS MUST BE POPPED, OR THEY WILL GROW OUT OF CONTROL.
IT IS A PAINFUL PROCESS THAT SOMETIMES TAKES AN HOUR AND A HALF EACH NIGHT.
KERRI: RIGHT NOW, SHE IS SMILING AND SILLY AND FUNNY, BUT IF WE ARE HERE IN ABOUT TWO MORE HOURS, WE WOULD HAVE A DIFFERENT SCENE.
IT IS VERY STRESSFUL, IT IS VERY PAINFUL, IT IS VERY DIFFICULT FOR HER AND EVERYBODY WHO HAS TO BE AROUND, TO LISTEN, TO BE A PART OF IT.
ERIN: MELINA WANTED TO SHARE WHAT IS HIDING IN HER SOCKS.
MELINA: IT IS SPREAD OUT BIG.
KERRI: HER FEET ACTUALLY LOOK REALLY GOOD RIGHT NOW.
ERIN: DUE TO SEEMS, HER SOCKS MADE TO ME TURN INSIDE-OUT.
MELINA: IF I WALK AROUND TOO MUCH OF IT WILL CREATE FRICTION, AND IT WILL MAKE BLISTERS RIGHT WHERE I SHOWED YOU.
THAT IS FROM A BAD CASE OF SHOES.
♪ ERIN: MELINA’S SCHOOL HAS HELD AN E.B. AWARENESS DAY WHERE STUDENTS AND STAFF SPORTED PURPLE SHIRTS TO SHOW SUPPORT.
>> I THINK SHE IS A VERY GOOD FRIEND, SO I KNEW THAT THIS WOULD BE A NICE THING TO DO FOR HER.
>> IT HURTS TO HAVE IT, SO YOU FEEL THAT.
>> -- BAD.
>> SOMETIMES YOU SHE HAS TO SIT ON SOMETHING SOFT.
ERIN: DO YOU KNOW WHAT EV IS?
>> IT MAKES YOUR SKIN VERY FRAGILE.
IT IS KIND OF LIKE A BUTTERFLY’S WINGS, SO PEOPLE CALL KIDS WITH E.B. THE "BUTTERFLY CHILDREN." ERIN: A FUNDRAISER FOR GENE THERAPY RESEARCH IS SHOWING GREAT PRODUCT OR US -- GREAT
PROMISE PAIRS OF OUR, THEY HAVE RAISED MORE THAN $100,000.
KERRI: WE’RE VERY GRATEFUL.
ERIN: THAT IS A CHANCE TO CELEBRATE MELINA AND OTHER CHILDREN LIVING WITH E.B., LIKE ABIGAIL OF MAINE.
>> SHE HAS A LOT OF PROBLEMS WITH HER EYES, BOTH INTERNALLY AND EXTERNALLY.
SHE HAS A GROWTH ON HER THROAT.
KERRI: IT IS AMAZING TO WATCH UGLY FACE CHILDREN WHO ARE AFFECTED -- IT IS AMAZING TO WATCH ALL OF THESE CHILDREN WHO ARE AFFECTED BY THIS DISEASE.
ULYSSES: TOMORROW, SHE WILL NOT BE ABLE TO WALK.
SHE WILL DANCE HER HEART OUT TONIGHT.
IT IS HARD TO FIND ANYTHING TO COMPLAIN ABOUT WHEN YOU SEE THE AMAZING THING THAT SHE DOES.
ERIN: ALWAYS LOOKING OUT FOR HER, MELINA’S OLDER SISTER WANTS TO BE AN E.B. DOCTOR SOMEDAY.
SHAYLA: SHE IS SO BRAVE.
SHE IS AMAZING.
ERIN: WHETHER HORSEBACK RIDING, PLAY AND ROAD GAMES, OR PLAY IN POSSIBLE MELINA PUSHES HERSELF TO THE LIMIT AND ALL SHE DOES.
HER FAMILY HOPES THAT A CURIOUS WITHIN REACH.
KERRI: I THINK IT WILL BE MORE WHEN SHE IS OLDER, SO THAT SHE HAS A CHILD THAT HAPPENS TO HAVE E.B. AT THAT POINT, IT WILL BE SOMETHING WE CAN SAY LOOK AT THIS, WE HAVE A CURE FOR THIS
DISEASE NOW.
♪