Jason and Amy Pratt have been blessed with five beautiful
children: Spencer (8), MacKenzie (6), Quinten (5), Bryton (3), & Kyden (20
mos). They have thousands of pictures
filled with laughter and smiles documenting their lives. It is hard to believe that 4 of the 5
children deal with some type of congenital anomaly.
Spencer was diagnosed at 7 days old as having an H-type trachea-esohagel
fistula. A fistula, from the Latin meaning ‘a pipe,’ is an
abnormal connection running either between two tubes or between a tube and a
surface. In tracheo-esophageal fistula it runs between the trachea and the
esophagus. This connection may or may not have a central cavity; if it does,
then food within the esophagus may pass into the trachea (and on to the lungs)
or alternatively, air in the trachea may cross into the esophagus.
and had his first surgery to repair the defect he spent 4.5 months in the
NICU. He was also diagnosed with a a
fundoplication. In a fundoplication the
gastric fundus (upper part) of the stomach is wrapped, or plicated, around the
lower end of the esophagus and stitched in place, reinforcing the closing
function of the lower esophageal sphincter. The esophageal hiatus is also
narrowed down by sutures to prevent or treat concurrent hiatal hernia, in which
the fundus slides up through the enlarged esophageal hiatus of the diaphragm. As of today Spencer has had 11 major surgeries
and countless procedures and still suffers with chronic acute asthma,
scoliosis, cerebral palsy, attention deficit hyperactive disorder, pervasive
developmental disorder , sensory processing disorder, strabismis, and VPI.
MacKenzie was born with an atrial septal defect (ASD) —
sometimes referred to as a hole in the heart — is a type of congenital heart
defect in which there is an abnormal opening in the dividing wall between the
upper filling chambers of the heart (the atria). She was also born with a ventricular septal
defect . VSD is a defect in the wall dividing the left and right ventricles of
the heart. This gave Mackenzie a three
level murmur, but thankfully as of last December, the hole has closed up
without surgical intervention.
Quinten was born with Wolfe Parkinson White Syndrome which is
a heart condition in which there is an abnormal extra electrical pathway of the
heart. The condition can lead to episodes of rapid heart rate. The condition was surgically repaired in July
of 2012 as well as a hernia that was repaired in August. Quinten also has chronic acute asthma and is
suspected to have Autism. They are
currently looking for a doctor that can help him.
Bryton was born with another type of trachea-esohagel fistula
similar to Spencer calledType C TE
Fistula and an Esophageal Atresia. An EA
occurs in approximately 1 in 4425 live births and represents a failure of the
esophagus to develop as a continuous passage; instead, it ends as a blind
pouch. Bryton had the first of six
surgeries at less than 24 hrs old and he
spent his first 3 weeks of his life in the NICU before he was released to come
home. Since has fought human respiratory
syncytial virus many times and a of pnemonia that lasted a year. Bryton also has reflux, asthma, tethered cord,
Spina bifita oculta, and other
neurological defects.
To prevent their kids from getting sick and to be able to
travel for medical care wherever that may lead, Jason and Amy homeschool their children
to prevent them having getting behind in their education. The life, vacations and travel are all scheduled
around some medical procedure or situation.
Even with all of the adversities that have affected their
life, Amy still spends countless hours trying to help other families by hosting
events where families that are going through the same things can get together and help each other out.
Team Shawn’s Anomaly member, Shauna Hall, will be honoring
the Pratt family as she competes in the Ironman Austin 70.3 on October 28th,
2012. Matthew is also honored to dedicate the
Ironman New Orleans 70.3 to the Pratt family during his challenge to complete
every Ironman in the US in 2013. The Pratt Family's story will be highlighted in all media interviews for that event and their story will be 1 of the 12 highlighted in the Shawn's Ironman Documentary. All
money raised during the New Orleans IM 70.3 and any money dedicated to the
Pratt family during on the www.indiegogo.com/im365usa1 fundraising page will go to pay for medical treatments for their children. We hope you will join us in welcoming the Pratt's to the Shawn's Anomaly family.
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