email us at: turkey4@frontiernet.net |
RACHEL HANSON |
Rachel was born on a nice October day in 1993, and when we brought her home we thought, everything was just fine. Rachel was a normal baby and started to do the things all babies do. It was her 2nd Christmas when we thought it was odd that she didn't care about the presents. Then when she didn't walk until she was 19 months we were starting to wonder. But just before her 2nd birthday when she wasn't saying any words and started to do things with her fingers that looked like sign lanuage was when we started to wonder "what was wrong". At her 2 year check up her Doctor referred us to a pediatrician, and from there it all began. We were sent to an Austism reseach clinic and they perfomed many skill tests that I knew by looking at them, Rachel would not be able to do. After a long exhausting day we were sent home to wait for the results. When they finally came we were told she was not Autistic and Rett Syndrome was ruled out also, even though we had never heard of it. From there we had an MRI which showed nothing. We didn't know what to do, so we waited a bit and then the seizures came, 15 in an 18 hour period. This brought us to the hospital and then our first neurologist appointment. He ordered more tests which showed us nothing. Rachel was now on seizure medicine and they were under control but we still did not know why she was not progressing at a normal range. By this time she said no words and could not communicate with us in any way. Then we scheduled an appointment with a child Psychologist, it was July 2, 1996 a day we will never forget. We sent all of her medical and developmental history along with a video tape of Rachel to the Doctor, and she knew Rachel had Rett before we even got there. It was a devastating day, but now we had an answer and we could stop looking. Rachel was in the regression stage and was not a very happy little girl. She spent most of her days crying and screaming. She didn't like to go anywhere because too much stimulation was hard on her. After a couple of really hard years, she now enjoys life, she loves going to school and has many great friends. She has a lot of great people in her life who make her very happy. |
About Rett Syndrome Rett Syndrome is a Neurological disorder seen almost only in females. First diagnosed by Dr. Andreas Rett. Rett Syndrome received worldwide recognition in1983. The child with Rett syndrome usually shows an early period of apparently normal or near normal development until 6-18 months of life. A period of temporary stagnation or regression follows, during which the child loses communication skills and purposeful use of the hands. Soon, stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent. Other problems may include scoliosis, constipation, seizures and disorganized breathing patterns. Apraxia, the inability to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of Rett Syndrome. It can interfere with every body movement, including eye gaze and speech, making it difficult for the girl with Rett's to do what she wants to do. Due to apraxia and lack of verbal communication skills, an accurate assessment of intelligence is difficult. Most traditional testing methods require use of the hands and/or speech, which may be impossible for the girl with Retts. Rett Syndrome is often misdiagnosed as Autism or Cerebral Palsy. |
About Rachel |
Rachel at 3 yrs. |
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I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It is like this..... When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice.You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland." "Holland?!" you say, "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. |
I read this right after Rachel was diagnosed, and it is really true. It explains how a lot of special needs parents feel. |
Rachel and her little sister Andrea in the fall of 1999. |
Family picture 2004 |
The world is like a mirror, reflecting what you do. And if you face it smilling it smiles right back at you! |
Tammy, Rachel and Bob on Rachel's 3rd birthday 1996 |
To learn more about Rett Syndrome and what you can do to help in research click on the above link to the Rett Syndrome Research Foundation website. |
WELCOME TO HOLLAND |
Thanks for visiting, we hope you come back again!! |
email us at: turkey4@frontiernet.net |
Rachel's kindergarten picture 1999 |
Sept 2002 along the Salmon river in Salmon Idaho on our way to see Rachel's Rett friend Katie Hallstrom. Rachel loved traveling! |
Rachel 5th Grade -2004 |
Rachel and her family at Myrtle Beach 2004. Rachel LOVES the beach! |
Rachel on Pensacola Beach at sunset - 2004 |