Shannon Maurice Iziah Imua (whom we all called "Bulla Boy"), 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 became completely blind, tube fed, unable to walk, crawl, turn over, sit up, or to even hold his own head in an upright position.

Bulla loved nice soft music and bath time!! Bath time became a Family affair at our house. His sisters Alexis and Ciara frequently joined in the fun hopping in and out of the bathtub filled with scented bubbles. It was a very special bonding time for the girls and myself with him, because it was when he seemed to be most responsive. I had prayed long and hard that this special bond would not be broken as Bulla grew more and more fragile.

I am able to close my eyes and recall the day I returned home with Bulla after an 11 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 went by.

Bulla was the ONLY person in the history of Hawaii, to ever have been diagnosed with Batten Disease! He also had 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 send this on, so that another person can learn about Batten Disease. Together we can educate the world, one heart at a time!

Bulla remained "stable" for many years, and was on medication to control the seizures and was on oxygen as needed.

I can remember so clearly the day Bulla died on May 24th, 2006. It was the very day that Taylor Hicks won for American Idol. Bulla came home from school, his nurse was here and gave him a strawberry bubble bath. When I came home from work, I went straight to his room and pressed my face into his neck, he smelled like a batch of fresh ripe strawberries.

I remember rushing and running around, cooking dinner, and getting Bulla's feeding bag and medications for the evening ready, so that I could watch American Idol. Bulla seemed in such a GREAT mood, and he was being such a good boy, unusually good, and not needing hardly any attention, quite and somewhat peaceful. I would pop in and out of his room often, saying "Bulla why are you being so good? Because you know mommy is getting ready for American Idol??"

The evening went on... and when I went into his room during the first commercial break, I felt *something*. I stood over his bed and looked at him, and thought "wow, he looks so tired, wonder what he did in school that day", so I yelled for Ciara to go downstairs and get his school communication book, she did, I was reading his book, and it said he was EXTRA EXTRA good that day, meaning that he went into his stander without crying,.. and did not grumble too much during PT, and that he went to the library to borrow a book... and so on.

The girls were yelling "Mommy, mommy, you're missing American Idol!" But I felt like I needed to be there with him, so I stayed. I held his hand, and kissed his fingers, while I was rubbing his arm and just staring at him... he took his very last breath, and closed his eyes... he was gone, just like that, it was a moment that I will never be able to explain, it was so peaceful, and so full of love. I climbed into bed with him, and wrapped my legs and arms around him. I could still smell the strawberry bubble bath, this moment was all I had ever asked GOD for, please let him be at home, let me be with him, let it not be scary, don't let him be in the hospital with tubes everywhere, and GOD granted what I had asked for, I felt very close to GOD at that moment as well. I thought "no more feeding tubes, no more wheelchairs, no more oxygen, feeding machines, suction machines, no more pain, no more suffering".

I miss him so much... the anniversaries are very difficult to deal with, you can't believe that life actually went on without him.

Thank you for EVERYTHING that MACS has done and continues to do! Many wonderful people who visit MACS and send mail to the children, will never know how vital it is to support these kids and their families!! May God continue to bless all of you!

Warm ALOHA!