Lacey's Story

I stated in my first post that my wife and I know what trials are all about and that I would share them at a later date. This is a brief story written by my wife to share with you about our daughter Lacey.

On July 24, 1999 Lacey was born at the Regency in Winter Haven,
FL. The doctors immediately knew she had a lot of problems.
They told us she would not be able to live, they had never seen
anything like this before. The neonatal doctor had her flown to
Tampa General Hospital where she spent the first 32 days of her
life. There she was diagnosed with a rare genetic syndrome by
Tampa’s genetic specialist who is considered “king of Genetics”.
The syndromeis King Syndrome.

Lacey was the third child they ever had known of being born
with this syndrome in the US, the second had died at 3 days old.
Lacey’s problems consisted of severe kypho-scoliosis which made
her spine crushing her lung, so she started out on a vent and
gradually made her way to oxygen by a cannula 24/7. She has
chronic respiratory insufficiency, webbing of the neck, low set
ears with severe hearing loss (she wears hearing aids),
arthogryposis , which is contractures in all of her joints, so
she can’t raise her arms up or straighten her wrist, fingers
or legs. The joints in her knees are in a frozen state so her
legs stay bent all the time, therefore she is unable to walk,
she scoots on her bottom to get around in the house and rides
a wheelchair everywhere else. She also was born with a severe
club foot and a vertical tailus, she has had surgery on her
feet 3 times but still her feet can’t sit flat on the floor.
More of her syndrome includes failure to thrive, so she has a
G-tube for feedings to help with nutrition, malignant
hypothermia which can cause death from anesthesia and she has
coded twice from this, and hypoglycemia.

The first two years of Lacey’s little life was not easy. She was
in and out of the Hospital constantly something going wrong. But
we were blessed and Lacey was quite a fighter. The most serious
was Lacey’s lung condition she was having a lot of problems and
they just didn’t think she was strong enough to fight the many
things against her, but she was and she did. In September of 2002
her spine was an 80 degree angle and her body was the shape of a C.
Lacey’s pulmonary specialist told us if something wasn’t done she
definitely wouldn’t be able to survive. Her spine was crushing the
lung so severely even with oxygen and a bi-pap machine she was
having difficulty breathing. Shriners in Tampa had been seeing
Lacey but felt her condition was to severe for them, so they found
us the surgeon in Texas who had invented this surgery that has
saved Lacey’s life! She has now had a total of 16 surgeries and
is 6 years old. She will have surgery in Texas every 6 months until
she is 16 or 17 years old. Lacey is such a miracle her pulmonary
specialist wants us to have a book written about her life.


To read more about Lacey's life changing surgery in San Antonio
see my link

Titanium Rib -VEPTR- saves lives