Sweet Kaitlyn's Journey
What is Hypophosphatasia
For more information please visit the links below:
~ Osteogenesis Imperfecta
~ Ehlers-Danlos Syndrome
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
YouTube Video Kaitlyn's Journey
Waking Up From Anesthesia
Sleep Deprived EEG
Appointment With Orthopedist
Wishbone Day 2014
EEG July 2014
Visiting Volunteer Dog During EEG
My Life With a Rare Disease Presentation
Being RARE means I am beautiful and unique!
Happy Rare Disease Day 2015!
"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.
"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
"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/
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.
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 :)
Mauraka Smith We currently do not have a Facebook page for her. Please feel free to follow her here on her GoFundMe site.
Thank you so much for commenting. It truly touched my heart as we were told by Doctors that Kaitlyn would never be a champion.
I do not have a Facebook page for her. Currently I am doing updates on here.
Good luck sweetheart. Is there a Facebook page where we can follow your journey? Love from Australia.