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Remembering Kirkland 
 
This drawing hangs on my living room wall and was given as a beautiful gift by my sister Robin and her husband, Ang upon Kirkland's death. The peace it brings me is indescribable.
The artist, Christine Simonds is the illustrator of Sylvia Browne's, "Book of Angels". She granted permission for me to display it here and is as gracious as her art.
This drawing depicts the Angel of Virtue.
Virtue angels are the last we see before entering this life and the first we see upon leaving this world.
Because they stand at the gates of Heaven, they are considered to be the Heralds of Incoming and Outgoing Souls.
How appropriate it is that Christine envisioned my son, when drawing this. I love seeing him walk his way to heaven after having spent his lifetime unable to do so.
Remembering Kirkland
March 6, 2001- December 2, 2007
 
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 nor 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!
Update: July 2010
I realize after reading this that I never did share the news from the final meeting with Sick Kids. Here goes:
The lab at SickKids took the remaining muscle samples out of the deep-freeze to check to make sure they were indeed Kirkland's and yes they were. It appears that the one time that his sample was pulled to send to the Mayo Lab, his tissue was mixed with a child who had NPC right there at SickKids. It was human error and the technician was made aware of it and is no longer there. This didn't occur upstairs in the mitochondrial lab but in the main hospital storage lab.
When the remaining samples were checked, it was also discovered that they were contaminated after 8 years of freezing & thawing which is expected. So we no longer have samples for future testing. There was still a bit of blood DNA left but that was it.
So as it stands now...we will never have a conclusive diagnosis. Muscle biopsies only last for a certain amount of time in the deep-freeze anyway. Had we performed an autopsy we could have secured a newer specimen for the decade following his death, but I wasn't willing to let them cut into my child any more. Enough is enough! When I saw the autopsy paperwork and the words, "LEAVE EYES", were sprawled across its front, my decision was made.
Alas...all is not over though. As new diseases are discovered and mutations are identified for diseases that ressemble Kirkland's, mine and Gerry's DNA will be checked to see if we are carriers. If so..that would lead the scientists one step closer to knowing what Kirkland's specific disease was. We will never have a positive diagnosis. Such is the world of scientific discovery in the year 2010.
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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.
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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
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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Journal
Wednesday, December 1, 2021 Journal transferred from Facebook
Wednesday December 1st, 2021 11:21pm
I’ve laid here trying to sleep tonight but have been tossing and turning as I do most years. As is always the norm, I’ve been playing the game “What was happening 14 years ago today?” I've been playing it for a few days now.
On this night 14 years ago and at this very time, I had just arrived home from playing my first Christmas concert with the Milton Concert Band. I’d received a call while driving urging me to hurry home as the nurse, Nancy, had been having trouble keeping Kirkland’s O2 sat rates up. It was clear that the end was near.
When I arrived, I quickly went to his bedside, readjusted his position and suctioned to facilitate clearing in his lungs. When stable, I assured Nancy that I was okay to manage on my own and she very reluctantly left for the night.
As the beep of the sat monitor rang out through the stillness of the house, I quickly changed into my pajamas, took off my make-up, and returned to the bedside of my dying child to perform the chest physio that had usually been successful in the past.
His sats I’d been noticing, had been dipping into the 70’s and I was having trouble bringing them up. I finally accepted that the alarm on the monitor would soon need to be turned off but I struggled with that. I turned him back and forth from side to side one more time to loosen his secretions in hopes of a cough.
The next couple hours passed quickly as Gerry and I sat by his bedside. I recall Gerry drilling me on whether this was it. Was the moment finally here? Should he go pick the boys up from the sleepovers they were having at Jeffrey and Mason’s. There was a snowstorm brewing after all and it was coming down heavy.
We worried about getting Carson home from Acton because highway 7 between Georgetown and Acton was always treacherous during heavy snowfalls. I recall questioning if we might be able to have Carson driven home by a snowplow if necessary. After all, the whole town knew Kirkland and a phone call was likely all it would take.
When we called Sue, she hurriedly gathered Carson up and brought him herself at what was now around 1:30 am on December 2nd. Gerry called Wendy to wake Evan and drove to the next street to pick him up.
I, meanwhile, witnessed Kirkand’s O2 levels slowly decreasing and called our Palliative nurse at SickKids to let her know what we were facing. I assured her that I was okay handling things on my own. They had trained me well for this moment. Dr. Newman, who was supposed to drive up from her home in Oakville, was not able to get there in the now turned blizzard that was upon us.
I pulled the lazy boy chair up to the side of the hospital bed in our living room where we could be near to the oxygen supply and cradled my dying child in my arms. Startled out of my daze, I realized that Gerry and Evan were now by my side as we sat pouring love into our 6 year old little boy.
The sat monitor was now shut off and the only sound in the room was the drone of the oxygen concentrator humming. Headlights turned into our driveway at last and as Sue brought Carson to the door, Kirkland took his last peaceful breaths. I recall only turning the sat monitor back on in order to put the adapter on his wee finger to be sure the level was zero. And as we all took turns holding Kirkland, I made a mental note of the time - 2 am December 2nd.
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If I recall correctly, the events of the rest of the night and following morning were shared in my Caringbridge journals. I’m inclined to go there now and share this entry however, sadly, I no longer have access to author journal entries. I have long since lost my password and the directors of the website have been unable to help me retrieve it.
My baby’s story however, remains on his page but the last time I was able to update was 2014. Wow...7 years ago since I’ve poured my emotions into his journal!
www.caringbridge.org/canada/kirklandk/
And I sit here now, much the same as I did back when he was alive...where I wrote during those long nights while sitting up with him...waiting to administer midnight meds...feeling the need to release my emotions through a keyboard, lights dimmed in the room... as quietly as I could while the household slept. And it all comes flooding back.
A mother can’t forget an experience such as the life of her child nor his death.
But it’s been 14 years they ask quizzingly? Perhaps not quite grasping the need for her to take the day off yearly to grieve and escape the PTSD that can very often be triggered from the stress of a regular school day. “Maybe she needs therapy??” some still whisper.
What she does know though is that the clock is approaching 2am, and this will be a long night as will be tomorrow. And she continues to play the game, “What happened 14 years ago tonight?” She knows that although the events of the day may differ, the emotions remain the same...and the longing is still there...all these years later...
Read Journal History
Hospital Information: HEAVEN !!
Links: http://www.mitomarch.ca a website dedicated to Kirkland's very own fundraiser for mitochondrial disease research.
http://www.heartbeatsformito.org a website created by our friend, Ann Eide. She's an incredible mom and writer who suffers from Mito also! Kirk is featured on her website so drop by to see him and all his little mito friends.
http://community.webshots.com/user/kilbridek for more photos of our family
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