I am always amazed at the strength a parent has for their child but when an entire family joins together to bring hope for one little boy, Anthony, it's got to be Love and Grace.

My friend and coworker Mia Skowronski, packed up her desk and put her coat on to head out the door at the end of an ordinary day for everyone. But, Mia was on her way to the Yale Children's hospital to give "Little Anthony" a bath and let him know his family is near by. Anthony is Mia's cousin. He was diagnosed with Myotubular Myopathy and had to spend five months in a children's hospital where he needed 24 hour care. Anthony's parents already had three boys and only found out about Anthony's illness at his birth. Mia was going to spend a few hours with Anthony so his parents could have rest and time with their other children. Other members of Anthony's family would visit him daily to bath him, caress him, talk to him and just give him lots of love. Anthony's story begins on May, 10, 2001 at 10:23 AM:

First Person (Anthony's Mom): That morning of May 10th began just like any other day except for the fact that we were very excited because it was the exact day that our baby was due. As 7am came we made our way to St. Vincent's hospital knowing that with the addition of another child, our lives would be different, we just didn't know how very different it would become. Anthony first appeared at 10:23 am with jet black thick hair, we were so excited until we noticed when our doctor cut the cord Anthony was not breathing on his own and became very blue. At that moment our emotional roller coaster experience began. Our emotions went up with excitement of a new baby and crashed down because he was not breathing on his own. My husband and I could not believe what was happening. The hospital sent a priest to baptize Anthony and give him his last rights. But, the staff worked really hard to keep Anthony alive. Then the news came that Anthony had to be transported to Yale Children's Hospital for more testing. Hours at St. Vincent's hospital turned into months at Yale Hospital.

Because of our family's love and the love of God and all our friends, Anthony kept growing stronger everyday. We all were praying for a miracle. Everyone we knew and even people we didn't know around the world were praying for "Little Anthony." On the day that Anthony turned three weeks old his brothers Frankie and Dougie were able to meet him for the very first time. We didn't let our three- year- old son Michael go yet because we were unsure about how he would react. Frankie read him stories and Dougie brushed his hair and they even helped give him a bath. But that afternoon brought sadness and our roller coaster ride seemed to spin out of control when the doctors had the difficult task of telling us that Anthony's diagnosis is Myotubular Myopathy and if that was not bad enough they went on to say that he has the most severe form of that disease.

Myotubular Myopathy is seen in males only while the female seems to be the carrier of the gene abnormality x-linked that caused the condition. Since 1969 there have only been 90 cases, which may explain why it took 3 weeks to rule out other conditions and make the diagnosis. We went to get some DNA testing and were forced to make some serious decisions. These decisions were made easier by the incredible support and encouragement of the medical staff at Yale's NICU. Their honesty about the situation helped to guide us on a difficult path. They helped us give Anthony a true bubble bath and get videos of him. They also let me "kangaroo" with Anthony. "Kangaroo" is when the mom can open her shirt and they put the baby on top of her chest-skin to skin. It was the absolute best feeling ever to have him so close to my heart and to be able to feel him on me!

Once we received the diagnosis my sister Cheryl went on line to research and thank God that she did. She found a wonderful Website on MTM1 and found a phone number in Texas for a family who opened the Website. We called them later that night and talked for 2 hours. We also talked to their son. We all had chills. They directed us to a family in Connecticut who had the same disease as Anthony. The parent's were wonderful. They welcomed us in their home and we hugged and tears just kept flowing.

Our little angel of a baby has brought hundreds of hearts together and reminded all of us how fragile life is. As the youngest member our family he has managed to accomplish more in five weeks than many of us have in 50 years.

Second person: On October 16th , 2001 Anthony was brought home via ambulance. The Katz family and friends welcomed him with a big Clifford sign and balloons. A friend, Damon, had also painted dinosaurs on each wall of his room, grass on the ground and clouds on the ceiling! Anthony remains on life support but thank God he is where he belongs. He is in the loving home of his family surrounded by people who love him. As Anthony family continues to give him all the love he deserves, their journey is made easier with helping hands and loving hearts.

To look into Anthony's eyes just once or to have him blow you a kiss is a confirmation that life is precious and should be celebrated.

"Anthony's Prayer" by Auntie Betty

It was but one short year ago,

Since I first saw my mother's face.

And felt the loving tenderness,

of my father's first embrace.

The first few weeks were really hard,

for my father and my mother.

But they prayed alot and asked God for help,

And they supported one another.

Each night there at my hospital bedside,

hardly ever did my parents sleep.

They loved me into living

And a promise they would keep.

To Love me every single day