Sweet Kaitlyn's Journey

$2,140 of $14.5k goal

Raised by 42 people in 27 months
Naomi Barringer   BROOMFIELD, CO
Kaitlyn was born with a rare genetic disorder called Hypophosphatasia (a chronic, potentially life-threatening metabolic disease characterized by defective bone mineralization that leads to destruction and deformity of bones, profound muscle weakness, seizures, renal failure and respiratory failure) as well as a Type I Collagen Disorder that lies somewhere between Ehlers-Danlos Syndrome (loose joints and sensitive skin) and Osteogenesis Imperfecta (a genetic disorder characterized by fragile bones that break easily). She also has undiagnosed Neurological Events that cause degeneration of the white matter in her brain (permanent damage to her brain).

What is Hypophosphatasia



For more information please visit the links below:

~ Hypophosphatasia 
www.softbones.org

~ Osteogenesis Imperfecta 
www.oif.org

~ Ehlers-Danlos Syndrome 
www.ednf.org

Due to the rarity of her disorders Kaitlyn has been seen in four different states and continues to be followed by The Metabolic Clinic, Neurology, The Skeletal Dysplasia Clinic, Cardiology, Nephrology, Orthopedics, and The Craniofacial Clinic. As a result of Hypophosphatasia it was found that her vitamin B6 was markedly elevated at 1270 mcg/L (normal values are 5-50) leading to recommendations that she have CSF (cerebrospinal fluid) neurotransmitters, CSF amino acids, and CSF pyridoxal phosphate obtained to asses these values. Two surgeries are currently being discussed, one with Orthopedics and the other with The Craniofacial Clinic.

Please help raise money for extra medical expenses and transportation so she can receive the best medical care available and have the best quality of life possible. Every little bit counts and all donations are greatly appreciated.

With God all things are possible. ~ Matthew 19:26

 

I can do all things through Christ who strengthens me. ~ Philippians 4:13

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http://www.lindastormphotography.com

YouTube Video Kaitlyn's Journey



Sleep Study

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Tibia Fracture

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Waking Up From Anesthesia

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Kidney Ultrasound

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Multiple Fractures

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Sleep Deprived EEG

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Overnight EEG

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Field Trip

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Appointment With Orthopedist

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Wishbone Day 2014

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EEG July 2014

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Visiting Volunteer Dog During EEG

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My Life With a Rare Disease Presentation

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Being RARE means I am beautiful and unique!

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Happy Rare Disease Day 2015!

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Update 27
9 months ago
In light of invisible illness weak I have decided to share this.

"The whole thing smells of Munchausen by proxy. The printed note? The girl that looks healthy?"

This comment was left on one of the news articles that was done about the note that was left on our car. ( http://m.huffpost.com/us/entry/55e84db6e4b0c818f61ac9b9)

Unfortunately, this is not the first time I have heard someone ridiculously mention Munchausen by proxy and I'm sure it won't be the last.

First, let me educate you on Munchausen by proxy;

Munchausen is a disorder in which the parent either fabricates an illness or induces an illness in their child.

A person with this disorder can not simply fuse the sutures in their child's skull or alter the genetic makeup within that child. Kaitlyn was born this way. In fact, we learned that her femur was fractured when I went in for an ultrasound at 32 weeks. So, her journey actually began before she was even born. I can't begin to express how thankful I am that there are days that my daughter appears "normal". We have fought extremely hard to get her to this point.

To those who feel the need to say this, please educate yourself before making asinine accusations.

https://m.facebook.com/sweetkaitlynsjourney
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Update 26
10 months ago
For those that are interested you can now follow Kaitlyn on Facebook.

https://m.facebook.com/sweetkaitlynsjourney
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Update 25
10 months ago
Kaitlyn's Chiari Malformation spontaneously improved after her first Craniosynostosis surgery, however, it has since returned. Kaitlyn's Chiari Malformation is likely a result of Hypophosphatasia and/or the connective tissue disorder.

"Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit in an indented space at the lower rear of the skull, above the foramen magnum (a funnel-like opening to the spinal canal). When part of the cerebellum is located below the foramen magnum, it is called a Chiari malformation." ~  http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
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Update 24
10 months ago
Kaitlyn had multiple-suture craniosynostosis where more than one suture was fused.

"There are six major sutures: metopic, sagittal, coronal (one on each side) and lambdoid (one on each side). The metopic suture runs from the bridge of the nose to the soft spot in the front (anterior fontanelle) and separates the two frontal bones. The sagittal suture courses from the anterior fontanelle to the posterior fontanelle and separates the two parietal bones. Each coronal suture run from the anterior fontanelle to a point just behind the eye and partitions the frontal and parietal bones. Each lambdoid suture separates the parietal and occipital bones and extends from the posterior fontanelle to a point just behind the ear." ~  http://www.ubns.com/clinical-expertise/pediatric-neurosurgery/craniofacial-anomalies/
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Read a Previous Update
Help spread the word!
 680 total shares
Sharon Smith
10 months ago
1
1

You are brave and full of love and so lucky to have a wonderful mommy to help you. Keep spreading joy and love with your beautiful smile . . . know that the universe responds to love with love and that people who are cruel and leave nasty messages on others cars are filled with self loathing and hatred. Not love. I truly feel sorry for someone so pathetic. Much love and joy for your future sweet girl.

+ Read More
10 months ago
1
1

Your story has reached as far as Brisbane, Australia, where I am from. I just wanted to say, I truly hope the person responsible for leaving such a hurtful note saw the news and is feeling terrible. Kaitlyn, you are so brave for going on national television to share your story, and not only so brave but your story has now reached every part of the world! Good luck little champion, keep being you and never let anybody tell you differently! Much love, from the land down under :)

+ Read More
Jasmine Bentivenga
10 months ago
1
1

I have shared on my Facebook. Hope it helps so sad that someone would treat u like this

+ Read More
Mauraka Smith
10 months ago
1
1

Have you set up a fb page so we can follow her story? And is there a more recent update? I will keep this sweet girl in my prayers! Good luck girly you are so strong and precious!

+ Read More
Naomi Barringer
10 months ago

Mauraka Smith We currently do not have a Facebook page for her. Please feel free to follow her here on her GoFundMe site.

+ Read More
Naomi Barringer
10 months ago

Thank you so much for commenting. It truly touched my heart as we were told by Doctors that Kaitlyn would never be a champion.

+ Read More
Naomi Barringer
22 months ago

I do not have a Facebook page for her. Currently I am doing updates on here.

+ Read More
Karen Peatt
23 months ago

Good luck sweetheart. Is there a Facebook page where we can follow your journey? Love from Australia.

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$2,140 of $14.5k goal

Raised by 42 people in 27 months
Created April 29, 2014
$25
Anonymous
10 months ago
$15
Anonymous
10 months ago
$100
Anonymous
10 months ago
$70
Anonymous
10 months ago
WM
$50
William Mahoney
10 months ago

God Bless. Kaitlyn's smile lights up the world.

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$100
Anonymous
10 months ago
$20
Anonymous
10 months ago
$25
Anonymous
10 months ago
$200
Anonymous
10 months ago
$25
Anonymous
10 months ago
Sharon Smith
10 months ago
1
1

You are brave and full of love and so lucky to have a wonderful mommy to help you. Keep spreading joy and love with your beautiful smile . . . know that the universe responds to love with love and that people who are cruel and leave nasty messages on others cars are filled with self loathing and hatred. Not love. I truly feel sorry for someone so pathetic. Much love and joy for your future sweet girl.

+ Read More
10 months ago
1
1

Your story has reached as far as Brisbane, Australia, where I am from. I just wanted to say, I truly hope the person responsible for leaving such a hurtful note saw the news and is feeling terrible. Kaitlyn, you are so brave for going on national television to share your story, and not only so brave but your story has now reached every part of the world! Good luck little champion, keep being you and never let anybody tell you differently! Much love, from the land down under :)

+ Read More
Jasmine Bentivenga
10 months ago
1
1

I have shared on my Facebook. Hope it helps so sad that someone would treat u like this

+ Read More
Mauraka Smith
10 months ago
1
1

Have you set up a fb page so we can follow her story? And is there a more recent update? I will keep this sweet girl in my prayers! Good luck girly you are so strong and precious!

+ Read More
Naomi Barringer
10 months ago

Mauraka Smith We currently do not have a Facebook page for her. Please feel free to follow her here on her GoFundMe site.

+ Read More
Naomi Barringer
10 months ago

Thank you so much for commenting. It truly touched my heart as we were told by Doctors that Kaitlyn would never be a champion.

+ Read More
Naomi Barringer
22 months ago

I do not have a Facebook page for her. Currently I am doing updates on here.

+ Read More
Karen Peatt
23 months ago

Good luck sweetheart. Is there a Facebook page where we can follow your journey? Love from Australia.

+ Read More
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