Kaitlyn's Journey

Kaitlyn has Hypophosphatasia (soft bones) and a non-specific connective tissue disorder that lies somewhere between Ehlers-Danlos Syndrome (loose joints and "sensitive" skin) and Osteogenesis Imperfecta (brittle bones). She has also been diagnosed with Periventricular Leukomalacia (death of the white matter of the brain from a lack of oxygen at or around the time of birth), very mild Cerebral Palsy, Craniosynostosis (premature closure of one or more of the fibrous joints between the bones of the skull before brain growth is complete) secondary to Hypophosphatasia, and mild bilateral Pelviectasis. It is not uncommon for children with genetic disorders to be predispositioned to other disorders or conditions. We were told by our local Doctors that she would likely never walk and would never be a champion amongst other asinine comments. Needless to say she does in fact walk and is our amazing little champion!!! For more information please click on the links below:

http://www.emedicine.com/PED/topic1126.htm

http://ghr.nlm.nih.gov/condition=hypophosphatasia

http://www.oif.org

http://www.ednf.org

http://www.northshorelij.com/body.cfm?ID=6409

http://www.ninds.nih.gov/disorders/periventricular_leukomalacia/periventricul...

http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm

http://www.ninds.nih.gov/disorders/craniosynostosis/craniosynostosis.htm

Category:

People & Blogs

Tags:

• Baby
• Hypophosphatasia
• Collagen
• Alteration
• Periventricular
• Leukomalacia
• Chiari
• Malformation
• Craniosynostosis
• Ehlers-Danlos
• Syndrome
• Osteogenesis
• Imperfecta
• Genetic
• Disorders
• Kaitlyn
• OneTrueMedia

[miss6013]

What a beautiful little girl. Was her operation to allow her brain to grow properly? I couldn't find out what it was for in the notes.

Thank you for sharing your story.

[nefkbbcb]

@miss6013 ~ It is called Craniosynostosis. "Craniosynostosis is a birth defect of the brain characterized by the premature closure of one or more of the fibrous joints between the bones of the skull (called the cranial sutures) before brain growth is complete". She has undergone two surgeries for this and we are awaiting another, hopefully her last.

[green1smile]

what a beautiful sweet child.kaitlynn,we'll keep you in our prayers here in the Holy land.G-d Bless you and your sweet family and keep the faith,hope and those shiny smiles :) :) :) :) :)

[nefkbbcb]

Thank you for your prayers!!!

[ufo8mykat]

Shine on, girl! Don't you ever give in! You fight and keep yourself on track for who you want to become. Ain't no mountain high enough.

[ashleymania1223]

im 12 and i also have osteogenesis...

[yashsamiksha]

My Son Nevaan Also had Craniosynostosis. his 2 stutures were joined, seeing your video all the memory came back to me, It was in BOmbay,India. I have seen all standing during operation and after operation My son did not bleed from eyes, but from nose and all blood filled his stomach... it was the most painfull night of my life ...i pray will pray for Kaitlyn

[MutilatedMetalMatt]

My little boy has HPP as well, he is 7 months old and was born with almost no skull bones, ribs the size of spaghetti and multiple bones missing and fractures, we have entered a clinical trial in winnipeg, MB for an enzyme replacement drug, and all of his fractures have healed completely; his ribs and bones have grown dramatically and he now has a complete skull, you should look the study up kids and adults are in it too and God is healing many of them

[LizzieStewart1]

She's beautiful! My little boy (Jeremiah) is 5 1/2 months old and had a grade 3 bleed at birth. He developed Hydrocephalus and Periventricular Leukomalacia as a result. He is currently on his 2nd shunt and was hospitalized from 11/25 to 12/21 with a shunt infection. It's so encouraging seeing your little one doing so well. Jeremiah is a little behind with head control, but I continues to improve daily. God Bless you and your beautiful little girl! : )

[safestawberry]

She is so beautiful! I'm sorry she and you have had to suffer so greatly. Any updates on how she is doing? any current pictures. She does seem like a very special little girl but she must be so big by now!!

[coolblitz1987]

i have cytomegalovirus and i am deaf person, also i have 4 surgeries on my hips. cuz i can't walking to 2 years old. finally i has surgery for my hips. i went thergy for help me to walking. i used wheelchair. finally i was 7 years old and learning walking.

[LexieandCody]

She is soooooooo cute. My name is Katelyn and I have EDS with IBS and TMJ. My first surgery I had was when I was three on my heart because I had a rip in my mitral valve. I've 14 surgeries on my jaw, joints and heart and I'm only 18.

[minkyrules]

5:11 is beautiful you are so right

[lxBayBTxl]

She is absolutely beautiful. God bless her