NOTE FROM THE MACS STAFF
Iziah's story has NOT been updated yet since he passed away on May 24th, 2006. We will update the end of his story as soon as we receive more information from his family.
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Iziah's Story
written by mom Toni
Hello! Please meet Shannon Maurice Iziah Imua ,whom we all call "Bulla Boy".
He was born on June 6th, 1994. Everything seemed so perfect with both
the pregnancy and his birth, but then... Bulla's progress slowed and
he began to regress. After many doctor visits, tests, trial medications,
a few wrong diagnoses, sleepless nights, unanswered questions, lots of tears and
countless prayers... My precious little Bulla was finally diagnosed with Batten Disease in August of 1996.
Bulla has 2 sisters! Ciara and Alexis who can explain to you that her brother has a "Very
Big Ow-Wee" in his brain that the doctors are unable to ever fix it. Bulla
is completely blind, tube fed, unable to walk, crawl, turn over, sit up, or
to even hold his own head in an upright position.
Bulla loves nice soft music and bath time!!! Bath time has become a Family affair at my
house, Alexis and Ciara frequently joins in the fun hopping in and out of the bath
tub filled with scented bubbles. It is a very special bonding time for the
girls and myself with him, because it is when he seems to be most responsive.
I have prayed long and hard that this special bond will not be broken as
Bulla grows more and more fragile. I am able to close my eyes and recall the
day I returned home with Bulla after an eleven day stay at the Children's
Hospital after his g-tube placement and recalling the concern as to how the
girls would feel about Bulla becoming more and more medically fragile and
being able to do less and less as time goes by.
Bulla is the Only person in the history of Hawaii to ever have been diagnosed
with Batten Disease! He also has the most rare form of the disorder which is
called Infantile form. What is Batten Disease? You ask. Batten Disease is a very rare, always fatal,
inherited disorder that attacks the entire nervous system. It is not
contagious and it is not preventable. It was first described 170 years ago. It can strike and affect more than
one person in the same family that carries the mutated/defective gene. There is no cure. It is ugly!!!
We would like to thank you for learning about Batten Disease today, and invite you to come back soon and
also to send this on, so that another person can learn about Batten Disease. Together we can educate the world,
one heart at a time!
Bulla is stable at this time on medication to control the seizures and he
is on oxygen as needed. We refuse to listen to the doctors... who keep telling
us that Bulla has 6 months to live... if that were the case he would not be
here this very day! If, and when that time comes for Iziah to return to
his Maker, I will be thankful that I had the opportunity to have been his Mommy.
Also, when he passes, Bulla's brain will be donated to the Batten
Disease Research Foundation, for research, to hopefully help an unborn child with this deadly ugly disease.
