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. 

Update~2009~ Rachel has grown so much since I created this website, she is 15 and in 9th grade. We've had off and on seizures over the years, her last one was on April 18, 2004. She is still on seizure meds but luckily they are under control. 
She has had scoliosis problems and has worn a brace off and on since 2003, she is on her 3rd brace now and the past 2 have corrected her curve down to single digit numbers which is great. She has the 'usual' Rett problems of reflux........thank God for Prevacid and constipation, thank God for Miralax :-). We have these problems taken care of for the most part. We found out that Rachel is lactose intolerant after an endoscopy in Jan. She has drank Pediasure for 10 years which is lactose free, so going to regular milk was grueling for her. Luckily the endoscopy showed the problem. She enjoys soy milk just as good so that is taken care of.

Rachel is still walking and quite well, although she gets tired pretty easily so we don't let her stroller get too far from us when we go places.
               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.
Please sign our guestbook!!
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!

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 - 2003
2008 Rachel -9th Grade and her sister Andrea in 4th grade.

This page was last
updated on: 2/19/09

In Dec. 2008 we took a big trip to see Mickey Mouse in Florida, usually we travel in our motorhome but this time, we got brave and FLEW! Rachel did great on the plane, better than we expected and it was a fantastic trip.