Sixteen candles

2017 marked the sixteenth birthday of The Information Point and Anthony and Mason, both diagnosed with myotubular myopathy, also celebrated their sixteenth birthdays. Our World spoke to Mason’s mum Staceyanne in California and Anthony’s mum Tina in Connecticut about their boys turning 16.

Anthony

Our journey began sixteen years ago when our Anthony, who is the youngest of three brothers came into this world. Anthony was born on May 10, 2001, at St. Vincent’s and immediately was transferred to Yale. This is where his journey began for the first five months of his life.

Images of Anthony

Not knowing what was wrong with Anthony and why he required life support immediately after birth; Yale doctors did a muscle biopsy. At two months they determined that Anthony had a disease called X-linked myotubular myopathy. The severest form of muscular dystrophy that affects only boys and gives them very low muscle tone.

At two months, this is when Yale gave us the decision to continue with life support or to take him off because they told us he would not see his first birthday and our lives would change. Well, Anthony turned 16 this May. He is the only boy living with this disease in Connecticut and our lives have changed very much … for the absolute better.

Anthony with friends and family

He doesn’t let his challenges hold him back for anything. In November, he went through a very difficult scoliosis surgery. He struggled for the first two months and was questioning why he did it but he never gave up hope that he would get better and fought so hard each and every day. He was back in school after the second month ready to conquer the world.

Anthony goes to Masuk High School where he attends regular classes and is a very active member of the school and the town of Monroe. Anthony was crowned Freshman and Sophomore Homecoming King for his High School, with his girlfriend as Queen. He is on the Masuk Track Team and participates every year in the 5K Sprint for Monroe race. He participates in school plays, sings in the chorus and is an amazing artist. He represents the Monroe Fire Department as they have made him an Honorary Fire Firefighter.

Fish drawing by Anthony

Anthony lives life to the fullest and this year will be such an amazing milestone for him. Every year his birthday parties get bigger and bigger. We have over 300 people that come out every year to celebrate our amazing miracle. We have bands that come and donate their time and the fire department come and actually give fire truck rides around town to the kids at the party.

Channel 8 news has been amazing with Anthony’s life. They came out for his first birthday and his thirteenth and now again for his sixteeth. Antman is a ham and loves the attention. His self confidence is amazing and this one little boy changes the lives of so many people. His attitude of life is contagious and he truly makes such a difference in so many peoples lives.

His three older brothers, Frankie 23, Douglas 21 and Michael 19 are such an inspiration to Ant and Ant to them. They treat him like a typical brother, yet the extra love they share with him is so beautiful. They all share a very unique bond with Anthony and Ant truly loves to have them all around. They keep him even more crazy and help him to get into trouble. It is so much fun to watch. Anthony has a new stander wheelchair, where he wants to be called ‘Optimist Antman’ a true transformer … lol. He can now stand all on his own when he wants. He will be able to walk up to get his diploma in a couple of years, dance nice and close at the Prom and have a freedom that he has never had before.

Anthony with his mum and dad

Anthony is going into his Junior year. He is always surrounded by many woman. The girls are his life. He has so many amazing friends ‘girlfriends’ and they have been with him since Elementary School. They each have a different day of the week and then sleepovers on the weekend. Their love for each other is truly the greatest gift of all and is what makes Ant thrive each and every day.

Some people have come up to us and said they were sorry when they see Ant. We tell them don’t ever be sorry, Anthony is living the life most dream of. He is happy, loved and gives love to everyone that is a part of his life. Life doesn’t get much better than this. We are truly blessed with so many of Anthony’s Angels here on earth.

Mason

Mason celebrated his 16th birthday on 10 June. It seems impossible that our ‘little’ boy is 16 years old … it’s still surreal to see the mustache and beginnings of a goatee … but 16!!! Scott and I would have loved a big blow out to celebrate this huge milestone but Mason wanted something simple, so instead we did our version of a ‘sweetly’ calm 16th. An open house type party, so all our family and friends could stop by for a quick hello or to stay and hang out with food and treats available all day.

Mason with his mum and dad

My brain knows that technically he’s becoming a man, the adam’s apple, the body hair and the goatee are something I still don’t want to acknowledge … but my mommy heart knows that he will always be my baby. I can’t help but reflect back on the life we’ve had with this precious miracle.

What an adventure this has been … every moment, every single treasured moment, I wouldn’t change a thing, wouldn’t trade any piece of it. The last 16 years, I know there are many who see mostly the struggle or the challenge, but this life, these years, they have been the greatest, most fulfilling, most joyful, happy and amazing times.

So many strive to make a difference in this world, to make or leave a mark, to do something momentous … I never wanted to be famous, or popular, or anything grand. I just wanted to be a good person, I just hoped that I would at least not cause any harm or any hurt, and most of all, I wanted to be a mother, I wanted to have someone that I could pour into all the love that I myself was given in my life.

My little Mason, he’s my greatest accomplishment, he is a light in my life, he is a light in this world, one I hope and pray all those around us feel, that they are touched by the pure and utter love his bright spirit shines … I may not ever make a momentous discovery or see myself on TV, but I know, deep in my heart, I know that bringing this one perfect little boy into the world, loving him unconditionally and with my whole being every moment of his 16 years, our love has changed this world for the better. This precious, courageous, valiant, strong and beautiful Warrior, he has inspired my faith, he has strengthened my soul, he has opened my heart and given me so much more than I could possibly of ever imagined.

Mason with his medal

As I sit and watch his sweet and innocent face sleep, as I feel his heart beat and listen to the vent whoosh, I am overwhelmed by the power of this one mighty spirit, I am truly humbled and honored that I have been gifted with such a perfect blessing … happy, happy birthday, my sweet boy … I love you more than the whole wide, of the whole widest, of the whole wide world.

So, an amazing birthday weekend but then the surprises kept coming in the form of a very special package from my friend Debbie – her medal from the Utah Valley Marathon which she had run in honor of Mason turning 16 … my sweet friend, she and her little family, have been heroes in my life for all of our shared MTM journey and the smile on my little boy’s face as he wears the marathon medal earned in his honor, is absolutely priceless.

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