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.
And Trinity Kids Care, Kelley, Gail, Himelda, Martha's, Linda, Cherry, Carmen and all the great staff.
And Los Angeles Regional Center Adal Valencia, Gloria Diaz (Aimee's teacher)
And our family's and friends.

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!