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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.
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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