AIMEE'S STORY
Aimee is our second daughter,
born on June 27, 2000. She has a sister Joanna who is 6 years old.
When it came time for Aimee's third month well-baby check, we were
concerned about her not being able to lift her head. Our pediatrician was not
concerned and informed us that some babies do not lift their heads until they
are six months old, so we left the doctors office
without worry. About a month passed, Aimee still had not shown any signs of
improvement. She could not lift her head or roll over. We continued to wonder
why Aimee was not progressing in the same manner that Joanna did. In
February 24, 2001 Aimee was baptized and it was a blessing that we chose that
day. The following day Aimee was hospitalized with pneumonia.
Aimee barely survived the first night in the hospital; she struggled for
every breath. Aimee appeared to be dying from pneumonia but somehow pulled
through the next day couple of days. The doctors were aware that there was
something else medically wrong with Aimee.
We heard one of the doctors mention SMA but like most families we had
never heard of this diagnosis. The doctors ordered a blood test. After a couple
of hours, the lab results came back confirming that Aimee had SPINAL MUSCULAR ATROPHY TYPE 1 (WERDNIG-HOFFMAN'S DISEASE) In that moment we had a
meeting with 10 doctors, who told us the worse news of our lives, our daughter
Aimee had a terminal muscular disease and there was no cure nor treatments
known. Most babies don't reach their first year.
I have no words to describe our feelings. More than sadness, more than
tragedy, we had more tears than our eyes could take.
We prayed so much because the doctors told us that Aimee had only 15 days
of life. I thought I would die at
that moment it was like being caught in a terrible nightmare. Only I knew I
wasn't asleep. Thank goodness my
parents were here with us at this time. My in-laws came from Mexico. My sister
came from Sacramento. My brother in law came from Arizona we had so much support
from our family and friends. On June
5, 2001, Aimee was coming home, this was a scary step. Aimee was obviously glad
to be at home! With the help of Trinity
Kids Care we take care of Aimee. Aimee
is daddy’s girl, she loves him so much. On June 5, 2001 my husband stopped
working to take care of Aimee and I went to work.
We are going to give to my Aimee all the happiness that she wants. And
its working, she is 2-years and 3 months! Thank
GOD. Aimee is always happy .playing, singing, dancing with her hands.
With hope & faith a miracle can happen. With the help of Trinity Kids
Care we had a full year where everything was working fine until May 18, 2002.
Aimee developed pneumonia. We took her to the hospital and the doctors
told us the same thing they did last year But this time she had only 2 days of
life. Thank GOD she came though and the last 4 months and she has been doing
great! With faith and love, we
hope to have more time with our little angel Aimee.
Every day we thank GOD for another day.
I want to thank all the people that are helping us…. Dr. Jeffery Johnson from
children’s hospital from Los Angeles Ca. GOD bless you all AIMEE IS FIGHTING SPINAL MUSCULAR
ATROPHY. We are prepared to fight
with her; if Aimee wants to keep fighting we will be right by her side. Aimee is
SMA type 1 (werding-hoffmann's) Thanks for reading my story. Please help us find a cure for SPINAL MUSCULAR ATROPHY!
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