Now we are ten: Anthony’s story

This story first appeared in the Information Point newsletter Our World in 2011, the year the Information Point celebrated it’s tenth birthday.  To mark the occasion, we asked some parents with children also celebrating their tenth birthday the same year, to reflect on the challenges and achievements of their first ten years. Anthony’s parents Tina and Doug continues the story below. 

Anthony lives in Monroe, CT and will be turning ten in May – he was born on May 10, 2001. Anthony has X-linked MTM, the severest form of myotubular myopathy. Doctors at birth gave him hours to live and said he would never see his 1st birthday. Little did they know that he would be turning ten but his positive attitude and his energetic drive to succeed is amazing. He is such an inspiration to all that meet him.

Anthony is in 4th grade in the public school and truly strives each day to do the best he can. He works so hard to read, write and now speak. His voice has gotten clearer and his attitude is so cool. He is definitely a typical ten year old. He can not swallow so he is fed via G-tube, his muscles are very weak so he requires a vent 24/7 but nothing gets him down.

He goes into a stander twice a day to help strengthen his bones because he has scoliosis and weight bearing is supposed to help. He has a tricycle that he rides and a power wheelchair that he should be given tickets for because he drives way too fast.

He has three brothers that love him so much. They all know how to suction him, how to change his trach and they each lay with him at night until he falls asleep. They are angels to him. We love watching them wake up to greet him with a hug and kiss hello or goodnight. It is awesome to watch.

Anthony has many friends (all girls of course) that come over each day and then they all sleep over every Friday and Saturday night. They have been doing this for months and the compassion they show to one another, one could only wish adults would be that way.

He gets up at 6.30 a.m., goes to school, therapy and then comes home to play dates each day, then goes to bed by 9 p.m. Where he gets his energy is beyond me. He always has a smile on his face and regardless of all of the obstacles he faces each and every day, he is so happy.

Anthony was just recently admitted to the hospital for viral pneumonia. He needed 4 liters of oxygen and we had to change his vent settings to give him a little more pressure because his heart was shifting. We brought him in on Friday and by Saturday night, he was so ready to come home. He was down to 2 liters of oxygen and so full of life! He is such a fighter and has more determination than anyone we have ever met. He came home on Sunday and went back to school on Thursday. He has special angels working overtime to help him heel! The power of prayer is incredible and we truly believe that he has many angels along with God to give him his strength! The doctor’s couldn’t believe how fast he recovered.

The last time Anthony was admitted was in 2004, so we thank God for being able to care for him at home as well as we do. When we feel it is necessary for him to be seen, or now that he knows his body so well, he will tell us and we will bring him in. We live life for today and never look for tomorrow. We just enjoy every moment we have with Anthony and our other three boys.

We try to let Anthony do as much as he possibly can. We don’t limit him to anything! He has gone on roller coasters, the Big Yellow Slide at the Big E, where there were lots of stairs to carry him up , he swims in our pool, went down a slip and slide (wouldn’t recommend that one though …), even rode on the handle bar of a ten speed bike! Anthony never misses out on anything, as long as we can make it happen, we do our best to make sure he never feels different! Anthony is not just alive; he is living life to the fullest. The happiness that Anthony has brought to our family is more than words could ever say. He has truly shown us what life is really about and we thank God everyday for blessing us with such an angel!

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