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The Story of Jay-Jay

Volume 1 Issue 1; December 1997

Left: Jay-Jay and Dad

Bob and Jay-Jay Have a Great Conversation

Once upon a time a long time ago on the far off isle of Taiwan a beautiful girl was born. She grew up in a nice family with many beautiful sisters and a wonderful Mother and Father. She wanted to travel and to see the world. So after she grew up she traveled to the far off land of America. There she me a nice but kind of sad man. They immediatly fell in love. She, alas had to go back to Taiwan and he had to stay in New York. They continued their long distance romance and soon he went to Taiwan and soon after she returned to New York. After a few more such meetings they became engaged and were married in Taiwan with much joy and feasting.

Soon after this the happy couple returned to New York and later moved to New Jersey. Because they were so much in love they wanted to create something made of both of them. They decided to have a baby. But neither of them was too young so it took them three years to conceive Jay Jay. He was born on July 12 and was very beautiful.

But Jay -Jay couldn’t breathe at birth.and his birth scores were 1, 1 and 5 which are very low. The couple was very worried. Jay-Jay needed help to breathe so he was intubated and a tube was inserted into his stomach in order to drain air that was outside his lung. At St Peters Medical Center, where he was born, one nurse liked him very much and asked if she could become his primary nurse. She took very good care of him along with his doctors and his loving Mom and Dad. They came to see him every day and sang to him in Chinese and English and told him stories and made the Doctors promise to take good care of him. He slowly became stronger and began to respond to everyone at the hospital, especially his Mom and Dad and his primary nurses. He would follow them around with his eyes and was very alert. Jay-Jay was given every possible test to try to determine what was wrong with him. He was given a CATSCAN and ULTRSOUND and EEG and hearing and eye tests. He did wonderfully well on all these tests but his muscle tone was very poor and he did not move well. Soon he was strong enough to be extubated and he needed only CPAP and a cannula in order to breathe.

In the mean time the Geneticists and the Neurologist teamed up and began to suspect that Jay-Jay had an extremely rare X-LINKED genetic muscle disorder called Myotubular Myopathy. They said that the only way to tell for sure was to take a muscle biopsy from him and test it to see what the structure of his muscles was.

In the meantime his father looked up Myotubular Myopathy on the internet and discovered the MTM user group site. He was very scared by what he read here but in some ways he was also encouraged by the heroic story of John and his parents. Jay-Jay had not as yet been diagnosed and his father held back his own fears and thoughts until the results of the biopsy had been determined.
Soon the results cme back. All of the Doctors called Jay-Jays father and Mother into a big room where they told them that Jay Jay had Myotubular Myopathy. Their hearts dropped in their stomachs. They could only look at the floor and not at the Doctors. They asked to be alone for a while and meet with the Doctors later. They cried a lot but finally could face the Doctors again. Then they were given some out-of-date literature that was even more scary. Luckily, Jay Jays father had remembered some of the information from the MTM Internet site. He printed out lots of information from the internet and gave it to the Doctors to show them that this disease is not progressive and slowly the muscles get stronger. He made them promise to continue Jay-Jays treatment as if he had not been diagnosed.

Now he called up the people at the User Group and spoke to Pam who was wonderful and gave him a lot of useful information and made him feel that he and his wife were not completely alone in the world. She told him more stories about her wonderful son John and he saw that Jay-Jay could still have a good life.

Jay-Jay continued to get stronger and began to move his arms and kick. He even drank a little from a bottle. But then a terrible thing happened. Jay Jay threw up. He must have aspirated some formula and had to intubated again immediatly. His parents, Bob and Sherry, decided to let the Doctors give him a G-Tube and Fundoplication and at the same time a Traecheotomy. The surgeon at St Peters had just initiated a new procedure in small children called a Laproscopic Fundopliaction which uses a miniature camera and several small incisions to perform the Fundoplication instead of one big cut
.The operations were all very successful although Bob and Sherry still cried a lot. Jay Jay seemed to get much more energy after he was on a vent. Soon a miracle happened and Jay-Jay began to smile. His whole face would light up. All the nurses and Doctors from St Peter’s and Respirator technicians also would come to see this wonderful little boy who had such a beautiful smile.
Bob contacted Doctor Gail Herman in Ohio to ask her if Jay-Jay could be part of her study on Myotubular Myopathy. She was extremely nice and very helpful with suggestions. Now Jay-Jay is part of her study.

Jay Jay was getting stronger and stronger. The Doctors recomended that he be transferred to another hospital The Childrens Specialized Hospital in Mountainside. This is where Jay Jay is today and he gets lots of therapy (PT OT RT and SPEECH). Three weeks ago he was changed to an LP10 which is a portable respirator. On the next day he was invited to go to a Christmas Party. He loved it. He met Santa Claus and many other children. Now Jay-Jay goes to group therapy class where he is the star of the class because of his enthusiasm and the way he communiates with everyone.

Bob and Sherry are still sad but they know now that Jay-Jay will have a great life. Soon, in February, Jay Jay will be coming home for the first time in his short but experianced life. Bob and Sherry can’t wait. One day when Jay-Jay is much stronger they want to take him to meet John and Pam and Gary in Texas. John and Jay-Jay and other MTM babies are the future generation and we believe that they will do wonderful things.

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