Alissa’s (LeeLee) Story

” …I am compatible with life; just ask my Family.”

Alissa Leann Johnson, Trisomy 18, Joshua Tree, CA, 7/31/2012

8/03/2018 Update: Alissa turned 6 years old today..she is such a strong …smart…funny little girl…she is my best friend…always and forever. Happy Birthday LeeLee Johnson I love you




2/21/2016 Update: LeeLee 3 years old and doing great…



Alissa LeeAnn Johnson7/24/2014 Update:   Alissa better know as “LeeLee” was born at 37 weeks of Pregancy…At Birth she was sent home from the Hosptial on Hospice and given only 2 weeks to live..After a month her Dad and I took her to three diffrent specialist that all agreeded we Should enjoy her while we could for her disease was leathal…Not wanting to belive this we sought the advice of an Amazing Doctor from Loma Linda university Dr. Weinburger ..She Gave our daughter a chance at life..She was able to find a doctor out of San Deigo Childrens Hosptial who was also amazing Dr Lamberti….LeeLee underwent open heart surgery at 6 months old… One of the scariest things i think my husband have or ever will go through in our lives..Alissa has a pacemaker now. And is doing Great.. She wakes up every morning with the most beautiful smiles and has tought us so much about life… She Brings So much Compassion, Love, and Strenght into our and so many people that she meets lives. We thank God for our presious little “LeeLee” every day. Alissa will be celebrating her second birthday this month. And we are so thankful to everyone that is apart of LeeLee’s Life and has been by our sides as we have been so Blessed to Have such Loving Family and friends along the way. HAPPY BIRTHDAY LEELEE. We All Love You Very Much.

Original Story: Hello, my name is Alissa Leeann Johnson, they call me Baby LeeLee. I was born with trisomy 18 on July 31,2012. They sent me home on hospice and gave me 2-3 weeks to live. Every week my hospice nurse would come and check my vitals and my weight. As my parents sat on pins and needles I always had a good report. After a month or so my parents wanted a second opinion. After seeing two more specialist that seem to say the same thing “Her disease is lethal there was nothing they could do, Enjoy her while you can.”

We found a doctor from Loma Linda, Dr. Weinberger, who said as long as there was nothing else life threating she would help us find a doctor willing to do the surgery even if it took a thousand phone calls.  And she did; Dr. John Lamberti of San Diego Children’s Hospital “Radys”.  On Feb. 1,2013 I had open heart surgery to repair my tetralogy of fallot, Large inlet VSD and secundum. On Feb 14 i had to get a pace maker put in to help my heart keep the rhythm, And now I am back home and doing better than ever. You see God has a very special plan for me he has answered so many prayers and opened so many doors making this possible. I am 7 months old now and I wish that doctors could learn that God is in charge and no one should ever limit the capabilities of a baby that is born with Trisomy 18. TRISOMY 18 IS NOT LETHAL……..I am living proof, and I am compatible with life; just ask my Family.
Thank you for Reading my Story
Baby Leelee
All things are possible with GOD…