Welcome to ^Angel Kirkland's^ Fan Club!!

The Georgetown Independent & Free Press- May 30, 2008







Kirkland's Mito March Team and I were honoured once again
on June 4, 08.
The Mito March team was one of 99 honorees celebrated and listed on the 2007 World Charity Award down at Gretzsky's Restaurant in Toronto. How great is that!!
Visit fanscharity.com for details
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Kirkland Allen Kilbride
March 6, 2001-December 2, 2007




To our visitors,
Much of the content here on Kirkland's page remains written as it was while he was alive. Sadly for us, he joined many of his little friends in heaven on December 2, 2007.
I've tried to re-phrase things but it just doesn't work so I've left it....Kelly




This is my school picture for Grade One. I attend Harrison Public School!
I'm a big kid now...I'm finally losing my first tooth!


Hi Everybody! Thanks for dropping by.

My name is Kirkland Kilbride and I’m six years old. I was born healthy, on March 6th, 2001.
I weighed a whopping 8 lbs. 9 oz. Everything was normal or so it seemed.
My mom, dad, and brothers loved to play with me and watch me grow.
My newborn life was pretty typical.
But… at two months old, my mom noticed some strange behaviour that looked like I was having lots of startle reflexes. It got worse and worse. By the time I was seen by my soon-to-be favourite neurologist- Dr. Conrad Yim, I was having 15 seizures in a ten minute period of time.

My epilepsy has never been fully controlled since that time but Dr. Yim has done everything possible to help me. I love him and Leanne (his nurse) a lot. We needed to find out the cause of my seizures which could possibly help with their treatment. While I was at SickKids Hospital for some medication complications, I met Dr. Feigenbaum who helped determine that I most probably had a rare mitochondrial disease called Complex One Deficiency.

Dr. Feigenbaum is another of my favourite docs. She’s my ‘Mito Doc’ and is really smart like Dr. Yim. She’s one of my best advocates and is really ‘up’ on all the new discoveries in mito research.
I can't miss Dr. Morra -she's my general paediatrician who thinks she's my girlfriend!
I've been told that I'm pretty irresistible!

I took an experimental mito cocktail for five years in hopes of slowing the progression of the disease but during that time, Dr. Feigenbaum continued to run tests for other metabolic diseases.
I didn't present with some of the main symptoms of mito disease so she'd never been truly confident that she'd accurately identified the root of my problems.
So...in December 2006 she again sent my skin fibroplast tissue to the Mayo clinic because I'd been very sick and my eyes were frozen in an upward direction (Vertical Gaze Palsy).
This made her suspicious of another disease.

Sure enough, in January 2007, those tests came back pointing to Niemann-Pick Disease Type C (NPC).
I am one of only 500 people in the world currently diagnosed.
It appears that my mitochondrial disease which is a deficiency in Complex One, is secondary to NPC.
I’ve learned that NPC is obviously quite rare and so is mitochondrial disease. NPC is an inability of the cells to metabolize cholesterol, fats, and other lipids. Complex One Deficiency is an inability to properly metabolize sugars and carbohydrates…so it’s kind of a double-whammy.

Almost all patients with NPC have liver dysfunction. Babies are born with jaundice and throughout their lives, the liver swells because of the accumulation of fats that can’t be processed.
My liver has always been fine…GO FIGURE??!!
…That’s why it wasn’t discovered until I was six. The only clue that my docs had was that my eyes were ‘stuck up’ as Mommy calls it.
They say I’m an atypical or unique case in both the world of NPC and that of Mito.

Unfortunately, research into both diseases is relatively new and under-funded therefore there haven’t been a lot of discoveries or effective treatments. My prognosis therefore, is very poor. These metabolic diseases are progressive and usually fatal. Symptoms vary from one kid to another but most docs agree on one common thread- most mito kids in particular, don’t make it past their teen years.

There’s no cure – Imagine that!
So with the assistance of my friends and family, I'm helping to find one!!
I have my very own research fund at The Hospital for Sick Children in Toronto.
To date my team has raised over $100,000 for mitochondrial research.
I even have my own annual event called, “Mito March: Kure for Kirkland”.
It’s a 5 km run-walk. I love everyone who helps to make it happen! xo

Because I don’t have enough energy in my cells, my body doesn’t work very well. Any energy that it does produce goes to my large organs and there’s not enough left for other areas of my body.
For this reason, I’m unable to do a lot of the things that other kids can do.

I used to be able to eat food by mouth but now I can’t (I have a feeding tube in my tummy). My muscles are very floppy because of the energy crisis in my cells so I can’t even hold my head up, never mind sit, crawl, walk, or talk. Because of the constant seizure activity in my brain, I don’t learn the same as the rest of you. There’s too much disruption in my brain signals to allow me to learn normally.
But hey, that’s okay…maybe I’m not the best learner but I’m a great teacher!!!
I’ve taught so many lessons to so many people.

Through me, my family and friends have discovered what’s truly important in life- unconditional love, faith, hope, support, and trust.
My mission here is grandiose and when I’ve done my part, my soul’s going to return to heaven where I’ll assess my impact on earth and be very pleased!
This is the biggest lesson I’ve taught my mom and dad.

Please follow my journey and you’ll share in my joys and triumphs, as well as my struggles and setbacks.
You’ll learn that the good in this world far outweighs the bad.
People are so good!
By entering my world of terminal illness, special needs and wonderful friends…you’ll gain insight, courage, and thankfulness that you never before knew existed in your heart.
Welcome to my life…Please read on!
luv Kirkie xo

Updated July 2007

P.S. Please sign my guestbook. I love reading your entries

*UPDATE May 2008*
At the time of Kirkland's death, we were awaiting the results of the final genetic test that would identify which Niemann-Pick gene was mutated in Kirkland's DNA and would therefore give Kirkland a conclusive diagnosis once and for all of Niemann-Pick Diseae Type C.
Shortly following his death, we received a call stating that they were having trouble at the lab locating one chromosome from the pair and before conducting further costly tests, they needed to check mine and Gerry's DNA to make sure we were both indeed carriers of Niemann-Pick C (if we weren't, then there was no way Kirkland could have the disease and they could avoid the expensive tests that were pending.

So in March 2008, Gerry and I headed down to the hospital to have our blood taken and sent to the Mayo Lab. In May 2008, I received a call stating that there had been a lab error and that Kirkland had been misdiagnosed with NPC. All tissue samples currently on hand would now need to be verified...it appears there'd been a switch in skin fibroplast samples.
The NPC diagnosis is out! We're back to square one with his muscle tissue simply showing a problem in Complex I and III of the mitochondria. Whether it's a mitochondrial genetic mutation is not known and may now never be known!
So...as of June 2008...all samples currently on hand are being checked to be sure they belong to Kirkland and from there I'm not sure what tests will be re-run. I will update with any news. Sigh... Welcome to the world of rare diseases!





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Support Mitochondrial Disease Research.
Visit Kirkland's fundraising site at: www.mitomarch.ca














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JOHN 9:1-3
As he went along, he saw a man blind from birth.
His disciples asked him, 'Rabbi, who sinned, this man or his parents that he was born blind?'"
"Neither this man nor his parents sinned,' said Jesus, 'but this happened so that the work of God might be displayed in his life.




CLICK HERE









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Just look at what a wonderful job Wee Piggies and Paws did of our family's life casts


Kirkie's wee piggies!


Kirkie, Mommy and Daddy's hands


A different view of Kirkie, Mommy, and Daddy's hands


Kirkie, Evan, and Carson's hands


The whole project: a cherished keepsake forever! Thank you so much Kevin, Kim, and Deb from Wee Piggies and Paws We're thrilled with everything!!



HERE
photos last updated: March 7th, 2008





Wouldn't it be neat to see where everybody in my fan club lives?

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world.
He approached God and sadly asked, "Why do bad things happen? Why is there suffering in the world?"
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused.
"What do you mean?," he asked.
God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer.
All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued,
"The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love – to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself.
With his wings fluttering, bouncing up and down, the little soul excitedly replied,
"I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave little soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts.

Those who were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.
The miracle had happened.
God was pleased.

J. Alessi

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**** Note **** I know the pages take a long time to load because of the graphics and I'm sorry for that. When stuck waiting for a screen to come up, try doing what I do...Click on the stop button (the red "x") up on the tool bar. It usually takes me right into the page for which I'm waiting

Journal

Tuesday, August 5, 2008 11:46 AM CDT

I am still here. I know some worry and wonder what is happening in my current life.
I cannot write...for two reasons really...

First there has been an emotional block between me and this- Kirkland's world. Secondly...there is nowhere left for me to experience the solitude I need in which to write. I have lost that place in my world.

It used to be here in my quiet living room alongside Kirkland's hospital bed...alone with him at my side. Now that space is empty. The room is full of noise and chaos. I glance over at the end table from time to time and view the beautiful photo of him looking into my eyes last summer.

My God...some days pass and my life just happens without him here. Yesterday...I was horrified when I realized that I hadn't even thought of him for 24 hours. I went for my walk to try and find him. I was panicked...How could a mother not think of the baby she's lost?

So I walked my usual route and begged his forgiveness, asking him why he allowed me to exist without him in my heart for periods of time...or so it seemed.
My heart was heavy.

The music played through my headphones as I pushed onward. "Psycho Killer...Qu'est-ce que c'est...ah ug ug ug....."

And I walked.

The next song that randomly played was, "In the Arms of an Angel". And my heart skipped a beat as I started to become more in tune with my son.

And I walked.

That song continued. Glancing downward, I noticed a lifeless butterfly on the sidewalk...still beautiful in its earthly body.

And I walked.

I asked Kirkland to stay near me...to help me feel okay again...

And I walked.

I turned around to head home and in doing so, looked down once again only to have my attention drawn to a dull penny lying there in front of my foot. I stopped with a smile and picked it up. There was that same tear that often trickles down my cheek and tickles as the wind dries it.
My special child as it was quickly becoming apparent, was there again making everything all better.

And the smile on my face grew as I clutched the penny tightly in my hand and walked onward...suddenly not feeling so alone anymore. Advancing a short distance...my glance once again fell upon that same butterfly...lying on the walkway.

And I suppose, with the penny to remind me...I stopped to look, slowly bending down to pick it up so its beauty would not be crushed by someone's foot. As I held it, its wing moved and I discovered that indeed, it was not dead at all. As I watched, its wings swayed side to side..

And I walked...butterfly and penny in hand.

Coming across a wall I stopped and placed the butterfly up out of harm's way. Then, still firmly clutching my penny I walked home with Kirkland beside me all the way...just as he always is.

I was walking up the driveway just as, "Pull Me Through" by Jim Cuddy started to play. Again I recognized this gift from Kirkland so I stopped to rest on the stone bench in his little memory garden. And placing the penny down on the bench beside me, I listened to the words...

"...you could always pull me through..even when I'm lying here drowning in my blues ...you take the sting out of the rain and bring the sun back up again...you could always pull me through..."

The music finished and abruptly brought me back to the present. But as I stood, my hand swept the penny off the bench into the surrounding grass. I knelt down...pulling grass while searching for the penny but with no success. It was gone once again...or so one might claim if he believes our existence in this world to be purely physical. Fortunately for me...I've been blessed with a son who taught me that it is other than that...a son who continues to gently prod me during times when my ability to recognize this miracle weakens.

And I know there will come a time one day soon, when life will be whizzing by too quickly and I'll be driven to go looking for Kirkland again in search of that special connection we have.

And I will walk.

But what I also know is that on that day as I stop to rest in his garden, a dull little penny will resurface as it often does, assuring me that all is well in both mine a Kirkland's world.

Thank you precious baby.
I love you so much Kirk...I miss you baby boy....I miss you so much........
Please don't ever leave me.
xoxoxoxoxo

Read Journal History

Hospital Information:

HEAVEN !!

Links:

E-mail Author: kilbridek@yahoo.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.