Bulla's Battle With Batten

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Aloha! And Welcome to Hawaii!

Aloha Oe'
It's more than just a easy word for a casual good-bye;
It's gayer than a greeting and it's sadder than a sigh;
It has the hurting poignancy the pathos of a sob;
It's sweeter than a youthful heart's exquisite joyus throb;
It's all the tender messages that words cannot convey;
It's tears unshed, and longing for a loved one gone away;
It's welcome to Hawaii! and it's lingering Farewell;
It's all the dear and silent things that lovers' lips can tell;
It's woven into flower leis and old Hawaiian songs;
It's frailer than a spiders-web,and stronger than leather thongs;
It's fresh as dew on Ginger blooms, and older than the moon;
It's in the little lullabies that native mothers croon;
It's said a hundred different ways, in sadness and in joy;
Aloha means " I LOVE YOU."
So............. So.............I say "Aloha Oe!"

The above drawing is titled..."Iziah...Our Little Warrior"
by artist Mark Hilliard.

You may see more of his artwork at the site below...

Angel's Resting Place

Hello! Please meet Shannon Maurice Iziah Imua ,whom we all call "Bulla Boy". He was born on June the 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 diagnosis', sleepless nights, unanswered questions, lots of tears, and countless prayers..... My precious little Bulla was finally diagnosed with Batten Disease in August of 1996.

This was Iziah's last day to ever sit up....the day before his last surgery.

Lexi and Iziah....Lexi is an extraordinary young lady!

Bulla has 2 sisters! Ciara who is 2 and Alexis at age 9, 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. Today is the first day of 1999, and at this time Bulla is completely Blind.....Tube fed.....Unable to walk,crawl,turn over,sit up, or to even hold his own head in a upright position. Bulla Boy Loves Loves 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 Childern's Hospital after his G-Tube placement, and recalling the concern as to how Alexis would feel.....or better put.....Treat her brother that she was used to playing with as if he was the boy next door.

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? Batten Disease is a very rare, always fatal,inherited disorder that attacks the entire nervous system.
It is not contagous, 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!!

When Cain asked this question,"Am I my brother's keeper?"he was really saying to God,"It's none of my business.How am I supposed to know where he is, or what he is doing?" But in his heart Cain Knew that he was his brother's keeper. He was responsible for what he had done to Able, Please read the whole story in Genisis 4. If we truly love Jesus, we will want Him to care for others through us. Do you look out for someone who cannot look out for themselves? Do you comfort people when they are sad? Do you help a neighbor who is ill? Do you give and not look for Thanks? Do you offer a Hug when you know it would make all the difference? Read Jesus' words in John13:35,36. For the eyes of the Lord are over the rightous, and his ears are open unto their prayers.---1 Peter 3:12 With God all things are possible, Somewhere out there, there is a cure to this Ugly, Awful Disease.....and with Prayer we shall find it.

Heavens Very Special Child

A meeting was held quite far away from earth;
"Its time again for another birth."
Said the angles to the Lord above,
"This special child will need much love!"
His progress may seem slow,
Accomplishments he may not show.
And he will require extra care.
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he is sent,
We want his life to be content.
Please Lord....Find parents who,
Will do a specail job for you.
They will not realize right away,
The leading role they're bout to play.
But with this child sent from up above,
Comes stronger faith and richer LOVE.
And soon they'll know the privilege given,
In caring for this gift from Heaven!

We would like to Thank you for visiting, 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! I will update this page as often as I can....Bulla is stable at this time on Medication to control the seizures as much as possible, he is on Oxygen as needed, He is seen by a Hospice nurse every Friday...We Holo Holo as much as possible....LOL that means to go bye-bye...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 Shannon to return to his maker...I will be Thankfull that I had the opertunity to have been his Mommy...also Bulla's Brain will be donated to the Batten Disease Reserch Foundation.....for reserch, to help an unborn child with this deadly ugly disease.
Mahalo
God Bless
Bulla Mommy Loves you so very much!!!!

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