About Us

My inspiration stems from sleepless nights of worry
and concern for my critically ill child of only 1 month
of age (at the time). I found that painting and
drawing rested my busy mind & offered a small plot
of peace in an otherwise uncontrollable
circumstance.

A LOOK AT MADISON'S HISTORY

Madison Taylor-Faith Ringenberg was born 01-02-03
at 5lbs 12 oz and 18 inches long. At the first listen to
her chest the nurses took her to NICU because of a
murmur. Several hours later they came to tell us
that our new daughter had 4 defects in her heart that
would require open-heart surgery. As suggested we
took her home to grow, only she did not. At 3 weeks
and now only 5lbs Madison suffered congestive
heart failure and was rushed to the Children’s
hospital. After 5 days of “coding” Madison was
taken to surgery in a sink or swim situation. They
fixed her 4 defects called Tetrology of Fallot and she
started her recovery. About this time we were made
aware that she was void of a thymus gland (your
immune system) and was being tested for DiGeorge
sequence. DiGeorge is an immune system
dysfunction that comes with another disorder called
Velo-Cardio-Facial syndrome, which is recognized by
a deletion in the 22 chromosome. It only took 24
hours for it to be confirmed that she had this
affliction.
On day 4 of recovery Madison ran a fever and was
labeled as “severely septic” with both a lung and
blood infection. We were told that the 3 antibiotics
were not helping and her lungs were too poor from
being on heart-lung by pass to help. Her lungs
collapsed several times and her body swelled to
maximum capacity with infection. She was having
blood and platelet infusion numerous times per day
and soon even had adverse reactions to that. She
was in a medically induced coma, on the ventilator
and taking maximum dosage of narcotics for 3
months. At times even the ventilator couldn't help
and she was put on an oscillator that pushed 300-
350 tiny breaths into her lungs per minute! She wore
earmuffs because it sounded like a jackhammer.
One amazing morning Madison decided she had
enough and she started to get better. Her blood and
lungs were taking longer to prove positive for
infection and they were letting her wake up. Within 2
weeks we were put on the “cardiac step down
unit”. It was that first day that they decided to let her
eat for the first time in months. I fed her several
ounces from a bottle and the rest went down an NG
tube in her nose. Within minutes Madison turned
blue and wasn’t moving. She was resuscitated only
to stop breathing several more times. We went
back to ICU after only ½ day.
Five days later she under went stomach &
esophagus surgery to reconstruct the damage that
the ventilator did. It had blown her esophagus wide
open and she was aspirating even her own saliva.
Her stomach was tied off so that nothing could come
up and a G-tube was put into her tummy so that we
could feed her directly into her stomach with a
feeding pump…a year later we are still feeding that
way today.
We have been home for several months and have
been diagnosed with numerous other problems.
Madison has a paralyzed soft palate that needs
surgery. Her left eye wanders off because of a
possible stroke that she suffered somewhere along
the way and needs surgery, and her pulmonary valve
has a 30% leak that will need to be repaired too. Her
immune system has not been a factor thus far
although we keep her on constant antibiotics and
are very germ conscience. She remains on a host of
prescription drugs to keep her blood pressure down,
her kidney stones controlled, to aid in digestion, to
keep fluid off her heart and help lung function. She
still hasn’t eaten or drank anything by mouth.
Madison and Mom have spent 7 out of 12 months at
Egleston Children’s hospital in 2003 and started year
2004 there too. She is petite (not even on the growth
chart) but has very few of the facial characteristics
of her illness. She goes to speech, physical and
occupational therapy several times per week. We
see about 5 specialists per week (and that’s if
nothing is wrong) and keep working toward our
goals. Madison is a beautiful, bright and happy child
and it is astounding that she is still with us.
We are hoping that the money raised at the 2004
Indoor soccer tournament will help offset costs for
an intensive inpatient stay at the Marcus Institute in
Atlanta. This aggressive therapy is Madison’s only
hope for regaining the ability to eat and drink by
mouth. We are also planning a trip to Children’s
Healthcare of Philadelphia (CHOP) to meet with the
worlds top doctors that specialize in DiGeorge
syndrome. CHOP is the home of Doctor DiGeorge
himself. We are hoping that some of Madison’s
issues can be resolved, or at best managed, by
having her seen by doctors that handle over 600
DiGeorge children throughout the United States.