Click ''donate" to make an online contribution to Rett Syndrome research in honor of Brynn!
My husband and I always knew we wanted to be parents when we were married. On
November 15, 2006, we were blessed with an angel from above. Brynn Peyton
Hileman.
Brynn has brought so much joy to our lives and is the most amazing child. If you are
having a down day, she will usually make you smile.
Brynn was a little late at doing most things as an infant. She rolled over late, sat up
late, and crawled late. We knew something was wrong, but couldn't figure out exactly
what. This was when Brynn was 14 months old. Her pediatrican said if she is not
walking by the time she is 2, we will refer you to Neurology.
So her 2nd birthday was here and she was still not walking. We then go to the
neurologist who refers us to the Developmental Clinic to test for austism. The results
are that she does not have autism, but suspect that she may have Rett Syndrome.
My heart dropped. We then proceed to get the blood work done and have to wait 4-6
weeks. I couldn't wait any longer so I called our doctor at 4 1/2 weeks to find out if
her blood work was in. The nurse on the phone said "yes, but you will have to bear
with me because there is a lot of paper work. Everything seems to be in normal
range. Her ammonia levels are low, but that is nothing to worry about." I WAS
RELIEVED!!! I was SO EXCITED that I had to call EVERYONE I knew and tell them
our good news.
We then proceed to see the neurologist on April 27, 2009 to figure out the next step.
I go to the clinic and tell her that she was tested for Rett Syndrome and everything
came back in normal range. The neurologist is looking in the computer at Brynn's
lab test and says "that's strange I don't see any of her results back from those labs".
My heart sank. I said "I talked with the nurse from our doctors office and she said
everything is in normal range." The neurologist then calls down to the lab and they
said they did not receive those results yet. HOW COULD THIS BE? The nurse gave
us the WRONG results. My emotions are all over at this point. The neurologist calls
to BAYLOR in Texas where her labs were sent and asked them about the results.
In the meantime, we had an appointment in Audiology to get Brynn's hearing tested.
As we were in the Audiology clinic, the neurologist comes there with Brynn's results
and confirms that she indeed does have MECP2 mutation that is consistent with Rett
Syndrome.
November 15, 2006, we were blessed with an angel from above. Brynn Peyton
Hileman.
Brynn has brought so much joy to our lives and is the most amazing child. If you are
having a down day, she will usually make you smile.
Brynn was a little late at doing most things as an infant. She rolled over late, sat up
late, and crawled late. We knew something was wrong, but couldn't figure out exactly
what. This was when Brynn was 14 months old. Her pediatrican said if she is not
walking by the time she is 2, we will refer you to Neurology.
So her 2nd birthday was here and she was still not walking. We then go to the
neurologist who refers us to the Developmental Clinic to test for austism. The results
are that she does not have autism, but suspect that she may have Rett Syndrome.
My heart dropped. We then proceed to get the blood work done and have to wait 4-6
weeks. I couldn't wait any longer so I called our doctor at 4 1/2 weeks to find out if
her blood work was in. The nurse on the phone said "yes, but you will have to bear
with me because there is a lot of paper work. Everything seems to be in normal
range. Her ammonia levels are low, but that is nothing to worry about." I WAS
RELIEVED!!! I was SO EXCITED that I had to call EVERYONE I knew and tell them
our good news.
We then proceed to see the neurologist on April 27, 2009 to figure out the next step.
I go to the clinic and tell her that she was tested for Rett Syndrome and everything
came back in normal range. The neurologist is looking in the computer at Brynn's
lab test and says "that's strange I don't see any of her results back from those labs".
My heart sank. I said "I talked with the nurse from our doctors office and she said
everything is in normal range." The neurologist then calls down to the lab and they
said they did not receive those results yet. HOW COULD THIS BE? The nurse gave
us the WRONG results. My emotions are all over at this point. The neurologist calls
to BAYLOR in Texas where her labs were sent and asked them about the results.
In the meantime, we had an appointment in Audiology to get Brynn's hearing tested.
As we were in the Audiology clinic, the neurologist comes there with Brynn's results
and confirms that she indeed does have MECP2 mutation that is consistent with Rett
Syndrome.
A special thanks to our donors:
Jill Dagger
Carol Myers
Tammy Nowicki
Cheryl Stoddard
Jill Dagger
Carol Myers
Tammy Nowicki
Cheryl Stoddard
We now know what is wrong with our sweet little angel from above and are very blessed
to know about Rett Syndrome. Everyday we grow to love Rett Syndrome and learn
more about it. Brynn teaches us a little about her world and we teach her a little about
ours. She may not be able to walk or talk, but we are NEVER going to give up. So if
you see our sweet little angel with a SMILE on her face, Smile back. It's just her way of
saying "Hello".
to know about Rett Syndrome. Everyday we grow to love Rett Syndrome and learn
more about it. Brynn teaches us a little about her world and we teach her a little about
ours. She may not be able to walk or talk, but we are NEVER going to give up. So if
you see our sweet little angel with a SMILE on her face, Smile back. It's just her way of
saying "Hello".
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