This is our precious son, our hero
Trent William Johnson. 
He entered our life on 1/30/01. At
his second month routine check up we were sent to a cardiologist where we found out he had
SVAS and were told he possibly could have Williams Syndrome. We had Trent tested and
the FISH results were positive. We accepted this immediately and he was our hero
from that point on. Trent through his first open heart surgery (then another one the
following day in the CICU) and a cranial stenosis surgery the following month during his
first summer here. After recovery, we started physical therapy and occupational.
He was doing fantastic and bounced right back after each surgery, a true fighter.
In 2002, Trent had to have another open heart surgery on April 23, 2002 and we were
told it went much better than ever expected. He had more energy and now we even
started speech therapy. Trent's aortic valve was a homograph valve that after his
July 19th cardiologist appointment, his body started to reject it at some point and sent
us back to the hospital On August 2. It happened that fast, not even 3 weeks. He showed no
symptoms of the valve rejection from the outside at all. We thought he had a cold
and took him to the pediatrician the Monday before and she said it was a virus. By
Wednesday, he wasn't eating as well and by Thursday wouldn't drink much milk either so I
planned on taking him back on Friday to the pediatrician. That Friday morning he
woke up with a dry diaper, I knew he was dehydrated and took him straight to the ER where
they too thought it was dehydration for the first few hours. The small leak had
turned into a full blown leak and had got into his lungs causing the cold like symptoms.
He fought for three days and the following Monday after a cath. we were told he
needed emergency heart surgery and a mechanic valve would be used this time. We told
him how much we loved him and they took him into surgery. After 6.5 hours the
surgeon came out and told us that Trent would not breathe for himself without the heart
lung by pass machine and that we lost him. He is now with our Father in Heaven and
being baby-sat until we can join him again one day. He gave us 18 months of
wonderful memories that will live in our hearts forever and we miss him dearly. His
smile was constant through every battle he faced, he is our hero. A week after
Trent's passing, I had a roll of film developed that included this adorable little
picture. This was my little guys last photo in his Braves outfit playing ball.
Thank You to everyone for the donations to the WSA, the flowers, the cards and the
wonderful parent to parent support daily on the WS listserv through all of this .
This Association has been a wonderful family to us from day one.
Please visit the ~ Trent William Johnson ~ Memorial Web Site.
Much Love to all of the WS families,
Cindy, Toby, Lindsay and Trent Johnson (1/30/01-8/5/02)
