HI! MY NAME IS SHANNON AND LIVE IN SHERWOOD, ARKANSAS. I AM 25 YEARS
OLD. I HAVE A BEAUTIFULL LITTLE BOY ETHAN, WHO WAS BORN WITH
ACHONDROPLASIA 1-7-2002. MY HUSBAND AND I ARE BOTH AVERAGE HEIGHT SO
IT CAME AS A BIG SUPRISE TO BE TOLD THE DAY AFTER HIS BIRTH THAT HE
MIGHT HAVE A TYPE OF DWARFISM. HIS PEDIATRICIAN WAS THE ONE TO PICK
THIS UP. HE SUSPECTED ETHAN HAD ACHONDROPLASIA WHICH WE HAD NEVER
HEARD OF BEFORE. HE BROUGHT A BOOK TO THE HOSPITAL WRITTEN BY DR.
PAULI IN WISCONSIN, WHICH SHOWED PICTURES OF CHILDREN WITH
ACHONDROPLASIA. ETHAN'S LITTLE HANDS LOOKED JUST LIKE THE PICTURE IN
THE BOOK. HE ALSO WENT THROUGHT SEVERAL X-RAYS WHICH WERE SENT TO
CHILDRENS HOSPITAL TO DETERMINE IN FACT, THAT ETHAN HAD
ACHONDROPLASIA. ETHAN WAS BORN ON A MONDAY AND EVERYTHING WAS
CONFIRMED THAT WEDNESDAY ABOUT HIS CONDITION. I THINK THIS WAS THE
FIRST TIME I EVER SAW MY HUSBAND CRY. HE LITERLY FELL TO THE FLOOR. WE
LOVED ETHAN SO MUCH, BUT WE WERE VERY CONFUSSED AND SCARED AT WHAT
THIS MEANT. SOON AFTER WE WERE TOLD, MY FATHER CONTACTED DR.PAULI AT
THE CLINICAL GENETICS CENTER IN WISCONSIN. DR. PAULI SENT A LARGE
PACKET OF INFORMATION TO US EXPLANING EVERYTHING ABOUT ETHAN'S
DWARFISM (HE IS ETHAN'S GENETISIS) THE HOSPITAL COULD NOT GIVE US ANY
INFORMATION. SUPRISINGLY, THEY HAD NO KNOWLEDGE OF IT. I LOOK AT ETHAN
AS A TOTAL BLESSING. I FEEL SO BLESSED THAT GOD CHOSE ME TO BE THIS
PRECIOUS LITTLE BOY'S MOTHER. HE HAS TOTALLY CHANGED NOT ONLY MYSELF,
BUT MY ENTIRE FAMILY. I HEAR ALL THE TIME FROM DIFFERENT PEOPLE
"MAYBE IF YOU PRAY, ETHAN MIGHT GROW UP TO BE TALL". TO ME THIS IS SO
IGNORANT. I AM VERY PROUD OF MY SON AND THE PERSON THAT HE IS AND I
WANT HIM TO HAVE THE SAME ATTITUDE. THE ONLY THING THAT I DO PRAY
ABOUT IS HIS HEALTH. ETHAN HAS BEEN SO SICK. HE HAS BEEN IN THE
HOSPITAL 3 TIMES, THE LAST TIME BEING JUST A FEW WEEKS AGO FOR
PNEMONIA. HE WAS IN FOR 6 DAYS. ETHAN HAS HAD RSV, PNEMONIA 3 TIMES,
BRONCHIOLITS SO MANY TIMES I LOST COUNT, AND NUMEROUSE EAR INFECTIONS.
ETHAN ALSO HAD SIGNIFICANT APNEA WHEN HE WAS SEVERAL MONTHS OLD.
EHTAN ALSO HAS KYPHOSIS. HE IS CURRENTLY RECEIVING THE SYNIGUS SHOT
ONCE A MONTH FOR 6 MONTHS FOR RSV. ETHAN TAKES A STERIOD UPDRAFT 2 X
DAILY TO PREVENT HIS WHEEZING. HE ALSO TAKES XOPENEX WHEN NEEDED WHEN
HE STARTS LABORING TO BREATH. I HAVE RECENTLY QUIT MY JOB TO STAY AT
HOME WITH ETHAN. HE WAS ATTENDING HELPING HANDS CHILDRENS CENTER,
WHERE HE RECIEVED PT, OT, AND SPEECH THERAPY. I KNOW THEY SAY THAT
THERAPY DOES NOT HELP, BUT I HONESTLY DO BELIEVE IT HELPED ETHAN.
I WASN'T EXPECTING HIM TO SIT ANY FASTER, OR CRAWL ANY SOONER, BUT IT
DID SEEM TO HAVE HELPED ON HIS GROSS MOTOR SKILLS. I PROVIDED THE
CENTER WITH INFORMATION ABOUT HIS CONDITION, AND SEVERAL OF THE
THERAPIST'S HAD DEALT WITH CHILDREN WITH ACHONDROPLASIA BEFORE. ETHAN
GOES 3 DAYS A WEEK NOW, FOR ONE HOUR OF THERAPY. THE REASON I AM
WRITING THIS IS BECAUSE I WOULD LOVE TO TALK WITH OTHER PARENTS WITH
ACHON CHILDREN TO DISCUSS OUR FEARS AND JOYS TOGETHER. I WOULD ALSO
LIKE TO ENCOURAGE AND HELP NEW PARENTS THAT HAVE CHILDREN WITH
ACHONDROPLASIA.ALSO, ETHAN HAS VERY LOW TONE IN HIS MOUTH. HE
ASPIRATES ON ANYTHING THAT IS TO THIN OR TO THICK? I WAS TOLD THAT LOW
TONE IN THE MOUTH WAS NOT PART OF HIS ACHONDROPLASIA. PLEASE ADIVSE
IF ANY OF YOUR CHILDREN EXPRERIENCE THIS.
I APOLOGIZE FOR THIS BEING SOOOOOO LONG.

VERY GRATEFUL,
SHANNON