Anthony Martinez

First post: Nov 30, 2016 Latest post: Mar 11, 2017

Anthony “Nene” - our pride and joy. That little miracle born 17 years
ago on August 18th. Born at 34 weeks, weighing only 5.3 lbs. and
spending his first week of life in the NICU at St. Paul Hospital Dallas (now
Southwestern). He struggled to breath, to eat on his own and couldn’t maintain
his body temperature. He failed his first few hearing tests and we were told
that he would be deaf. We prayed like never before and the Lord answered by
restoring his hearing. From that moment, we knew that Anthony’s testimony would
carry him throughout his life and that the Lord had a greater plan for him.

Anthony was diagnosed with binder syndrome at 7 months by Dr. Fearon,
craniofacilist specialist at Medical City Dallas. Binder
syndrome is a rare congenital disease affecting the face. Also called
nasomaxillary hypoplasia or maxilla-facial dysplasia, the condition results in
undergrowth of the central face and may include elements of the nose and upper
jaw. To correct a piece of that condition, Anthony underwent reconstructive
nasal surgery at age 4, 9, and 14. Though the surgeries were painful and hard
to recover from, he always took them as a champ and we never heard a single
complaint from him.
 
Since birth, Anthony was has been under the primary care of his
wonderful pediatrician, Dr. Hidalgo, who has taken care of every single aspect
of his health and growth. Easter Seals was involved to assist Anthony with developmental
skills and speech at the age of 2 and 3. We had wonderful therapists that would
come into our home on a weekly basis to work with him one on one. We were told
that due to the binder syndrome and his premature birth, Anthony would need
extra help in school.
 
At the age 9, mom noticed that Anthony was not growing.
He had been wearing the same size clothing from the previous year. Finding this
very strange and alarming, we were referred to a pediatric endocrinologist.
After numerous tests, Anthony was diagnosed with growth hormone deficiency –
meaning his body was not producing the hormone to allow him to grow. Devastated
by the news, we had no choice but to keep moving forward. To Anthony, this
meant that he would need to take daily injections of the growth hormone. Mom
and dad went through training to administer the injections, except that mom was
never able to give him a single injection. Dad had to take over this task while
mom was on the phone every six months with the insurance company pleading that
they cover the very expensive injections. For six years, Anthony endured daily injections.
We traveled with them on vacations, on mission trips, to camps, basically wherever
Anthony had to stay overnight. And through all this, God’s hand was with us.
Anthony’s injections were always covered by the insurance company and the
treatment plan was a success.
 
Anthony has endured much, but has never given up –always
trying his best. Striving in school with all his AP courses and reaching higher
and higher every year. He was gifted intelligence and puts it to good use. That
“extra help” we were told that he would need, never came into play. Anthony
works hard and we are just so proud of him for everything he has been able to
accomplish. Falling in love with soccer at a very young age, Anthony was an
active soccer player from age 4 to 15. Unfortunately, due knee injuries and
needing knee surgeries, that love fell short and he had to give up playing.
But, he did find another love – his love for the saxophone. He is amazing with
it! He just made jazz ensemble at school and we can’t wait to attend his first
performance. 
 
It is now the end of 2016, and we are fast approaching
the final phase of correcting the binder syndrome. It is the day that Anthony
has long awaited. In exactly two months from today on January 16, 2017, Anthony
will undergo a 4 hour surgery which will entail breaking his lower jaw and
moving it forward and to the right. He has been in braces periodically for a
total 7 years of his life, so to finally see the finish line, is just HUGE for
us. We take for granted the ability to eat and bite food properly and for so
many years, Nene has struggled with this – waiting for the day that his bones
are fully mature to undergo this major surgery that will completely change the
way he eats and looks. There is still much to do, much to coordinate and much
to finalize before we get to that day, so please keep us in your prayers. We
believe in an awesome God and our faith, trust and strength is in Him. 
 
Thank you for visiting our CaringBridge website.
We are using it to keep family and friends updated in one place. 

To all our family and friends – we thank you in advance for the love, support and prayers for Nene and his continued journey.
Jesse & Monica

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

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