~ ~Angel Katelyn~~

{ A.K.A.~~~ Princess Puffy Cheeks }

AUGUST 1 2003 ~ MARCH 28 2005


CLICK HERE

It’s not how tragically we suffer, but how miraculously we live

Picture compliments of Kirk’s nurse Jody


If roses grow in Heaven,
Lord please pick a bunch for me,
Place them in my daughters arms
and tell her they're from me.

Tell her that I love her and miss her,
and when she turns to smile,
place a kiss upon her cheek
and hold her for awhile.

Because remembering her is easy,
I do it everyday,
but there's an ache within my heart
that will never go away.







Children think parents are their strength, the truth is they are ours

Hi, My name is Katelyn Laforet. I was born on August 1 2003 and I weighed 8lbs even. I was born with a rare metabolic disorder called CDG (congenital disorder of glycosolation). It means my body cannot transfer the sugars needed and therefor I am unable to absorb proteins which causes a varying degree of disabilities. There are approximately 300 kids in the world with this disease and I am one of about 20 kids with type C. It is said that this type is sometimes a milder form of CDG, unfortunately I have one of the worst bowel problems in the world of CDG. By the time I turned 18 months old I spent more than 14 months in the hospital. I have had many procedures done and I’ve been poked so many times dad told me he was going to use me for a lawn sprinkler. I am unable to eat any food and fed TPN through a PICC line in my right arm. The TPN has helped me develop and grow better than I normally would have on food but it is causing hepatic liver disease and I am not eligible for a liver transplant, in short there is nothing that can be done for me but to pray for a miracle. I believe they happen everyday, I’ve seen this first hand. I myself have been fortunate enough to receive them.

Here’s my story………

I didn't want to eat much for the first month and my parents took me to the hospital when I turned one month old when I became very dehydrated and limp. Nobody knew what was wrong with me there so I was flown to London Children’s Hospital where I spent 3 weeks in the intensive care. My electrolytes
were crazy, hemoglobin, platelets and albumin were all dangerously low, my clotting time was very high but yet I was still clotting. After several procedures, surgeries, blood transfusions, recessitations and extensive investigations from every medical department available she was stabilized but still undiagnosed and became a medical mystery. My parents were told not to expect much because things were not looking good for me. I was unable to eat and was fed TPN during this time through a permanent IV in my chest. Once they thought it was safe they tried to give me a special formula which started the vicious cycle all over again. Mom and dad had to stay at the Ronald McDonald house while I played all night with the nurses.

After 6 weeks in London I was transferred to Sick Kids Hospital in Toronto for further examinations and to try and find a diagnosis. The nest 11 weeks consisted of several procedures, surgeries, extensive testing including another PICC line insertion, skin biopsy and a liver biopsy which caused a puncture in the blood vessel which caused internal bleeding. They performed an emergency angiogram which took 6 hours to repair and embolize the puncture. Feedings were attempted once again and after the 2nd try we were sent home on another special formula called Neocate which costs $75 per can which lasted 2.5 days. Finally, Dec 30 we got to go home for a VERYshort stay.

On Jan 2 2004 I became very ill once again and I was immediately brought back to the local hospital for a day and flown back to Sick Kids Hospital. I was returned back on the TPN and taken off the food immediately. I contracted an infection in my PICC line which made me very ill, with CDG children infections almost always cause severe bodily trauma and include hospitalization. Another line was surgically inserted after the infection cleared and restarted on formula once again fed through a tube in the nose by a pump. I had an eye test done and they thought my vision was impaired, I showed them though, it corrected itself and was great within a few months. At the end of Jan the diagnosis of CDG was confirmed, the next step was to determine the type I had, now I can go home as planned, at least I thought.

In Feb I caught RSV(respiratory infection) which forced me back on the TPN. Once that cleared and I started back on formula until I caught another type of virus which was life threatening for me again. I fought hard and was able to return back on formula again but unsuccessfully. I had a g-tube inserted even though it became clear I was not going to tolerate any type of feeds anytime soon. Mom and Dad were trained on the home TPN program which meant they would be solely responsible for hooking it up at night to my picc line and unhooking me in the morning, doing sterile dressing and cap changes weekly. I was also given this experimental medicine called mannose which costs $500 a month with no coverage once I went home. It never did work though and was taken off of it in the beginning of May.

It was planned for discharge after the training program until I decided it was time to start having seizures, the first one resulted in a full code blue. Thanks to nurse Erica and a wonderful team, they saved my life. Thankfully they got them under control within 2 weeks with phenobarb and I never had one again. During this time I also had an anaphylactic reaction to a coconut ice cream bar. Mom stayed with me the entire time, and even got to stay right in my room. Dad drove 361km to see me every Friday night and went another 361km back home on Sundays, he didn’t miss a week end. It was an unusual lifestyle to say the least but at least we could be together, we still had a lot of fun regardless.

Finally after 242 days in the hospital, on May 6 I could go home. It was going to be a challenge and scary but well worth it. I started home therapy and mom received 4 hours of respite a week to get a break. We were put on a VERY LONG waiting list for enhanced respite but by the time it was approved it was too late. At times my health could deteriorate and within an hour I could go from laughing to becoming deathly ill, because of this I stayed with at least one of my parents at all times. Understandably many people at home were scared to stay with me. Mom and dad learned how to draw blood from my picc line so it could be tested closer to home, thanks to the local hospital lab making this exception. I got to do many things at home for the first time, swing, pull the dogs hair out, feel the sun hit my skin. I was developing very quickly and adapted to home life wonderfullyy. I missed my family back at Sick Kids so I decided I would pull on my Picc line in July so I could go back for a 3 day stay to have it repaired. I started drinking sugar water from a bottle with no stomach problems. This was an accomplishment because I hadn’t used a bottle in 5 months. I celebrated my 1st birthday and had a blast with family and friends. I was spoiled to no end, everyone loved having me home and I managed to stay home and healthy until the end of August, then I became very ill.

I was flown back to Sick kids and the whole thing started over again. I caught many life threatening infections. I was very ill and started bleeding internally and my liver functions were crazy, even the doctors were scared and I was almost put in the intensive care. I received many transfusion’s to save my life. After a few weeks I went home again but only to return, this went on for the next 7 months, I would only stay home for 4 days before getting sick again. I was like a yo-yo and they didn’t know why these things were happening. I would have fevers for unknown reasons, diarrhea, problems with my blood, I was lethargic, had ascites and ademisis (fluid problems), elevated liver functions and many other problems. I did manage to stay home for one month in February after my grandpa passed away, who says miracles don’t happen, I was there to help the family get through it all. I started getting phenobarb through my IV instead of in my stomach which my parents had to learn too which wasn’t known for family to administer at home. I didn’t matter how sick I became, I would always smile and could make anyone’s day brighter. I was the mascot on the 7C unit, I had many friends who were like my family and some wonderful nurses and doctors who helped me live life the best I could. I even found myself some boyfriends! You know, life really is a blessing. I had my mom with me and dad came every weekend I was in the hospital. I could make anyone adore me, wrap them around my finger as fast as you can blink (just ask the nurses), how could it get any better than this?

In March, Katelyn returned back to the hospital and her liver started failing. After 3 weeks, she could not fight it any longer, she earned my wings and went to play with grandpa and her best friend Caillin, who also passed away 3 weeks prior from this awful disease. They were made to be together, they did everything together at the same time.

What is CDG ?????????????

CDG is an awful disease which causes many problems. The first 3yrs can be the most serious and life threatening sometimes resulting in death. There are several areas of the body that are affected but progress differently in each child and at different stages of their life. Some of the
functional and common problems of CDG are: cardiac issues;
dysmorphic features; haematological (blood coagulation
problems); thrombosis; gastrointestinal bleeding and feeding
issues requiring occupational therapy, feeding tubes and
feeding pumps; severe liver dysfunctions; visual
impairments; nephrologic issues; hearing loss requiring
aids; communication and language disturbances requiring
speech therapy; several neurological issues including
seizures, mental and physical retardation, delayed motor
development requiring physical therapy, temporary coma
episodes, lethargy and unresponsiveness, failure to thrive,
hypotonia, balance and co-ordination issues, spinal
deformities and osteopenia. Many of these issues eventually
require children to need continuous support and care from
others throughout their life and special equipment such as
wheelchairs, walkers and eventual home adjustments such as
handrails etc.

Katelyn was very blessed in many ways, she fought hard to avoid most of these problems and developed very well, especially considering the time hospitalized which in itself effects development. She definitely had an angel looking over her.

You can view the daily journals of her life bel ow in the “Read Journal History” section at the bottam of the page, better grab a coffee!



TRANSFUSION COUNTER: 103 total
KM traveled to hospitals 47, 169km
Hospital Admission’s 18
Plane rides to hospital 3
Ambulance rides 11
Days in Hospital 430
Longest consecutive stay - 242 days
Blood Transfusions 103
Procedures 39
X rays 25
Ultrasounds 28
IV’s 35




Katelyn’s first Dr appointment



Thanks for the pic Susan



MY PERFECT CHILD

As my children were born, I wanted them to be perfect.
When they were babies, I wanted them to smile and be content playing with their toys.
I wanted them to be happy and to laugh continually instead of crying and being demanding.
I wanted them to see the beautiful side of life.
As they grew older, I wanted them to be giving instead of selfish.
I wanted them to skip the terrible twos.
I wanted them to stay innocent forever.
As they became teen-agers, I wanted them to be obedient and not rebellious, mannerly and not mouthy.
I wanted them to be full of love, gentle and kind-hearted.
"Oh, God, give me a child like this" was often my prayer.
One day he did. Some call her handicapped... I call her Perfect!!

A LETTER FROM HEAVEN

"To my dearest family, some things I'd like to say.
But first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here, there's no more tears of sadness; here is just eternal love.

Please do not be unhappy just because I'm out of sight.
Remember that I'm with you every morning, noon and night.
That day I had to leave you when my life on earth was through,
God picked me up and hugged me and He said, "I welcome you."

"It's good to have you back again, you were missed while you were gone.
As for your dearest family, they'll be here later on.
I need you here badly, you're part of my plan.
There's so much that we have to do, to help our mortal man."

God gave me a list of things, that he wished for me to do,
and foremost on the list, was to watch and care for you.
And when you lie in bed at night, the day's chores put to flight,
God and I are closest to you... in the middle of the night.

When you think of my life on earth, and all those loving years,
because you are only human, they are bound to bring you tears.
But do not be afraid to cry; it does relieve the pain.
Remember there would be no flowers, unless there was some rain.

I wish that I could tell you all that God has planned.
But if I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is o'er.
I'm closer to you now, than I ever was before.

There are many rocky roads ahead of you and many hills to climb;
But together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too....
That as you give unto the world, the world will give to you.

If you can help somebody who's in sorrow and in pain,
then you can say to God at night... "My day was not in vain."
And now I am contented.... that my life has been worthwhile,
Knowing as I passed along the way, I made somebody smile.

So if you meet somebody who is sad and feeling low,
Just lend a hand to pick him up, as on your way you go.
When you're walking down the street, and you've got me on your mind;
I'm walking in your footsteps only half a step behind.

And when it's time for you to go.... from that body to be free,
remember you're not going.... you're coming here to me.

Love you all,
Katelyn (Princess Puffy Cheeks)


my nephew wrote this & read it at Katelyn’s funeral………….



Goodbye Sweet Angel

Life is not judged by how you live
But remembered for the message that you give
You were a special girl who just too much to say
So lets just say you’re perfect in each and every way
You gave us all a smile when your world was sad
To wipe away our tears and let us know you’re glad
That all the pain you felt was worth it anyway
To be in your parents arms each and everyday
We never got to hear your words, but we all wish we did
To hear you tell your parents, they made you a happy kid
No matter how sick you got, their love would never leave
And stay with you forever, which some may not believe
I wish I got to see you more, because I didn’t very much
But my heart is on the list of all that you have touched
You gave us a world of love in the short time you were here
Which showed us all that we had nothing we could fear
We’re all so sorry you had to go through all those things
But heaven is finally ready for Katelyn to get her wings

In Memory of Katelyn Laforet
By Rick VanEvery





If Love Could Have Saved You, You Would Have Lived FOREVER


Mommies Angel
I'm going to tell you something I hope you'll never have to know.
I'll tell you how a heart can break and tears can constant flow.
I lost my baby girl you see, an Angel in my eyes
God chose to take her hand one day and led her to the skies.
But please do not forget my child she was a person too,
And forever she will live inside of me and you.
So, please don't ever tell me that time will heal my pain,
Because not even time can bring her back again.
Just tell me she is happy in that land way up above
She's snuggled in an Angel's wings all wrapped in Mommy's love.




The time has come
to say goodbye.
I'll always be with you,
so please don't cry.

I'll see you again
when we both have wings.
And then we'll do
all sorts of things.

Until that day,
please don't ask "Why?"
Just think of me
as a BUTTERFLY.




If you change the way you look at things......the things you look at change




Katelyn writing love letters on Kirkland’s website
(March 19)


To see a special tribute to Katelyn from her boyfriend Kirk, click on
Kirk’s Fan Club















For more pics click HERE , it’s a link to Webshots with over 200 pics of Katelyn and we update them as often as possible.
Last Update on May 14, 2005

For more pics of Katelyn, her memories, the memorial garden in works and of the Fundraiser held on April 27, 2005(compliments of Debbie Galos and Photographer Melanie Clare), click on MORE PICS
Last Update on June 10










Friends are angels who lift us to our feet when our wings have trouble remembering how to fly









picture compliments of Susan~~thank you






Check out the new photo’s of the Memorial Garden I finally posted below.

Cool Slideshows

CLICK ON THE PHOTO TO TURN THE PAGE!!!

Cool Slideshows

CLICK ON THE PHOTO TO TURN THE ALBUM PAGES!!!



CANADIAN BLOOD DONOR CLINIC

As most of you know Katelyn received 103 transfusions in her short life time, it has been a great honour to our family for everyone that has donated blood ‘In Honour of Katelyn”.
So far to date there have been 290 units of blood donated in her name and counting…………

Anyone can donate blood from anywhere, anytime and fill out a card to have their blood donated in honour of our Angel.




~Help us bring awareness to importance of Blood Donation

~Some of our Caring Bridge Families depends on it
VISIT Canadian Blood Services
Or your local blood clinic










Thank you for visiting Katelyn's webpage, it means so much to us to know that you have visited her site. We appreciate the support of the people who always take the time to keep in touch with us and hope that you will come back again.

With that being said,PLEASE, take the time to sign the guestbook so we know you are here, even a name makes a huge impact. It not only helps us to see your support but it also helps our family and friends who are also affected by the loss of Katelyn.






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Journal

Saturday, March 21, 2009 12:39 AM CDT

I guess it is time to update once again before one year approaches. So much has happened since the last update.



The 5TH Annual Blood Donor Clinic will be held on April 1st at the Portuguese Club in Leamington. If anyone wants to donate blood anywhere around the world in Memory of Katelyn you can ask for a Memory Donor Card and send it to us at:

In Memory of Katelyn Laforet
RR3#
Wheatley, Ontario, CANADA
N0P 2P0

Every 5th clinic we are going to try and make it a big event with door prizes at the clinic and advertising. We are hoping to beat last years results off 177 people!

That's all for now. Thank you so much to the people who continue to visit our page in spite of the lack of updates,it seems to get harder and harder every year.



**************************
On March 28th it will be 4 years since we lost Katelyn,
I wrote this for her...

In every sunrise, every mountain
Every rainbow, every star,
I'm loving you, I know you're there
Yet I'm not sure where you are,
Are you sitting there on Grandpas knee,
Is Grandma at your side,
Along with all those dearest friends
Watching a tear drop from our eye?
Are you sitting here beside me
Or were you that bird that flew?
I feel the wind blow in my ear,
And I'm wondering if it's you,
Are you reading over my shoulder,
Are you holding my hand right now?
I want to tell you I love you
But I'm not sure I know just how,
I can feel you wiping my teardrops
And asking me please not to cry,
I'm missing you and loving you
In every day gone by.
*********************************************

Take care everyone,
Deb

E-mail Author: miraclegirl101@hotmail.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.