Rachel's Arthrogryposis Story
Hi. My name is Rachel Hope Faske. I was adopted from China when I was 3 years old. I was born with Arthrogryposis Multiplex Congenita (AMC). Arthrogryposis (AMC) is a muscle disorder which causes multiple joint contractures limiting the range of motion in affected joints. My Daddy says that AMC means “Able to Maneuver Carefully.” The good thing about my AMC is that it won’t get worse. It can only get better through using my muscles to learn how to do new things.
My mother’s friend, Barb Burke, taught her a lot about Arthrogryposis while my parents were waiting to adopt me. Mrs. Burke has a website for her daughter with Arthrogryposis and it was very helpful to my parents, so we decided to show all the things I can do too. My sister, Abigail, took all these pictures to help me share with you what it is like to have Arthrogryposis. This is my story.
I am five years old now and I am growing fast.
First I want to show you some pictures of what Arthrogryposis looks like.
When I was a baby, an American doctor came to China and repaired my dislocated hip.
My hips do not work quite the same as everyone else, but I have learned how to walk!
Doctors weren’t sure if I would be able to do this, but I surprised them!
I also had clubbed feet, but the same doctor that fixed my dislocated hip,
fixed my feet too. One of my legs is a little bit longer than the other leg.
I am so thankful that he helped me. My knees are limited in how much they can bend. My left knee can only bend this far.
My right knee cannot bend as far as my left knee.
My shoulders are affected by Arthrogryposis too,
but over time,
I have grown stronger
and now I can lift my hands above my head.
Almost all of my joints are affected by Arthrogryposis, but I can do many things.
I have not had any surgery on my hands yet, but my doctor at Texas Scottish Rites
Hospital is planning to do surgery to help stabilize my thumbs. They bend all
the way back right now.
This is what my hands look like.
This is my right hand. This is my left hand.
I have beautiful, long, slender fingers.
When I first wake up in the morning, I get dressed and put my shoes on.
I can buckle my shoes all by myself, but it takes me a little longer.
Then I brush my teeth.
Then I brush my hair.
My mom or sisters still help me to put a ponytail
or bow in my hair, but I can brush it by myself.
After that, I make my bed all by myself. ^^^^^^^^
Next I go downstairs for breakfast.
I can go down the stairs by holding the rails or I can go my favorite way
…………sliding down on my bottom as fast as I can!
Sometimes we have a big breakfast
and sometimes we just eat cereal.
Then all my brothers and sisters start their school work.
I am learning to write too.
After school, I like to play with my sister, Miriam.
She is six months younger than I am. We love to play together.
Miriam goes to gymnastics.
She teaches me some of the things she learns.
I can do a forward roll!
I can also do the splits almost all the way down to the ground.
I used to scare my mom when I did this,
but my doctor told my mom that it was “Okay.”
We also like to have tea parties.
Sometimes my baby brother, Jonah, likes to play too.
Mommy lets us put water in our cups and eat crackers.
I have had to learn how to sit down
without bending my knees.
It is sort of like “falling down,”
only a little more controlled.
I get up in an unusual way too.
When it is time for bed, I go upstairs to my room.
I used to have a very hard time crawling up the stairs.
I even used my chin to help pull me up each step, but now
I can go upstairs by holding the rails and catching my
balance with my other hand.
At night, I wear AFO’s on my feet.
They help keep my feet straight.
I crawl into my bed using a step-stool.
Before I go to sleep, I say my prayers.