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This is my friend Misty who is 36 years old and she enjoys every minute of it. Misty wrote
out her story to share with you all. Normally she has a Dynavox, which is a machine that
speaks aloud what she types, but it is currently broken, so I am here to help her convey her
message.
She has severe spastic Cerebral Palsy but she is blessed beyond belief to have her mind
and speech although the Cerebral Palsy has affected the muscles in her mouth, making
it difficult for her to be clearly understood. She feels extremely honored that Jesus chose
her to have a disability and does not view this as a limitation in her daily life although
society views it that way. She is engaged to a wonderful man named Aaron who she just
adores and he understands her in many ways as well as every word she says. Aaron has
a severe case of Obsessive Compulsive Disorder and possibly asperger's. Due to their disabilities
they are both on Social Security Income and medicaid. Misty and Aaron have been together
for twelve and a half years, being engaged for the majority of it. They are not able
to live together as she needs more care than what Aaron can provide her and she does not
to burden him with the responsibility of taking complete care of her. They have discussed
marriage several times over the years but have always found it to be impossible because
they would lose their benefits. They held a non-legal wedding ceremony in July 2007
in front of Jesus, their families and friends but they would love to legally be married
in the state of Kansas. Misty has many health issues besides her disability so she can not
afford to lose her medicaid. Her doctor describes her as being medically frail.
To give you a better history of her life, Misty put it in her own words that I will
read now.
"When I was born my mother's doctor was out of town, the doctor who was on call wasn't
a good doctor. My mom & I didn't have any heart monitors on us, she was in labor for
sixteen hours & was bleeding. The placenta detached while I was still in the womb, the
doctor didn't realized this until she started delivering. After I was delivered he placed
me to the side still grey & blue & not breathing to try to save my mom. After that failed,
he worked on me. My family hired a lawyer to sue, but after learning he had done this
to five other women in another town, my family decided to go on with life. My grandparents
took my father, my big brother, & me in after mother past away because my father was a fire
fighter & he worked 24 hour shifts. My father remarried in August 1980, Together they had
two boys. I have had many surgeries through out my life, but I am only going to tell you
about my last surgery. My right hip never developed normally because I didn't walk,
at the age of 12 my right hip dislocated. My doctor advised my father & step-mother
to wait until the pain was unbearable before doing surgery. I was already having back surgery
to fuse my spine due to severe scoliosis. Six years ago I had the surgery to remove
the top of my right femur bone. My father told me that a few days after my surgery my
heart stopped due to a morphine overdose error. I was on life support & had many infections.
The doctor gave me a day to live & told my father to call the family. Three weeks latter
I woke up & the nurse took the breathing tube out & I told my father that I loved him. After
the nurse made sure I was breathing fine she left the room, my father & I made calls to
the family & one important call to my fiance, Aaron. After the calls I took a nap, I must
of stopped breathing because I woke up a few weeks latter without my voice & breathing
through a tube in my neck, but I was happy to be awake & alive.. After five months in
the hospital I had to go to nursing home because the staff at my home were unable to care for
someone with a tracheostomy. My trachea has been out for three years now & living back
in my home. Two months after I left the hospital my father past away from a blood clot in his
lungs. I have three brothers, my big brother is from the same mother as me. My first born
baby brother Michael, was the only one who volunteered to take over for my father with
helping me. Michael is my Medical Power of Attorney & my Payee even though he is a father
of two beautiful little girls. I feel very blessed to have an wonderful brother. I made
it through all of my surgeries & I have had pneumonia fifteen times & I am still alive
because of Jesus. Jesus has never left my side even when I blamed Him. I just wanted
to share my story with you."
Misty is asking all of you for your help. She recently wrote a letter to her local news
and newspaper concerning the laws of losing benefits when becoming legally married. But
she have not heard anything back from either of them. Misty would love for you all to share
her story, as well as many others who are in the same situation as Aaron and her. She
wants the word of mouth to spread her story so that people who can change the laws or
anyone else who can help hears it.
Lastly, I will read the letter that she wrote so you have a clearer idea of what to share.
My name is Misty Schlegel, I am 36 years of age & loving it. I am engaged to a wonderful
man named Aaron who is just a sweetheart! Due to the lack of oxygen at birth I have
severe spastic Cerebral Palsy but, I am blessed to have my mind & speech, I feel very blessed
that Jesus chose me to have a disability. Aaron has OCD & possibly asperger's, we are
both on SSI & medicaid. If we were to get married we would lose all of our benefits,
I have many heath issues besides my disability so I can't afford to lose my medicaid. My
doctor describes me as being medically frail. Aaron & I have been together for twelve & a
half years, & we really want to get married and make it official. We are not able to live
together as I need more care than what he can provide me. We have discussed marriage
several times over the years but have always found it to be impossible. I would like to
make it so disabled individuals could get married and still keep all of their benefits.
In some way I feel the government is punishing us for doing what we feel is right in our
hearts by getting married. I am asking for your help by making my voice be heard.
In best regards,
Misty D. Schlegel
Thank you for your time. Misty would greatly appreciate any help that
she can receive so she can make a change in the laws to help benefit everyone.