ABOUT DJ
DJ was born in the year of the ox in the Chinese calendar (1997). He was a sweet, good-natured baby. He learned to sit at the age of 5 months. He started taking solid foods by 5 1/2 months. He never particularly liked the bottle, so he switched directly to a sipping cup. His first tooth came in when he was 10 months old. He wore his first pair of shoes on his first birthday. He loved to play with cars and trucks, and his toy piano.
(DJ is 6 months old)
DJ has always been a source of great joy and laughter for his parents. He loved to push buttons, so his favorite toys were actually the TV remote control and the telephone -- he was always cutting his parents off at crucial moments. His mom, Akari, even gave him an old computer keyboard to bang on because he would reach out and delete her documents when she worked at home. When he was 9 months old, a friend taught him how to hammer pegs in a bench. Unfortunately, DJ would bang on including the piano, so he had to be retrained into banging on a pop-up-toy. This desire to bang on things continued until he was 15 months old and he could no longer sit up.
DJ enjoys a special relationship with his dad. He would get really excited, bouncing up and down when he saw his dad. Davis always let DJ ride on his shoulders. Davis would run around with DJ up there, clutching his hair and laughing like crazy. They looked like two maniacs. DJ shared a love of music with his dad. DJ listened intently when Davis played "Puff-the Magic Dragon" on the guitar for him.
(DJ is 3 1/2 years old)
He loved warm weather days when he could go outside. He was happiest with the wind in his hair and the sun on his face. DJ also loved the water. He liked bath time, but he
preferred to kick and float with his mom in the warm water therapy pool. DJ slept so sweetly, with his arms wrapped around Paddington Bear.
His parents took great pleasure in watching DJ react to his younger sister, Madison. Most of the time, he found her incredibly interesting and loved to listen to her noises. He also liked to touch her soft hair. She liked to grab onto his hand and sleep up against his warm back. However, DJ did complain to his mom about the "noisy girl" when she cried!
DJ was surrounded daily by the love of his extended family. He received lots of hugs and kisses from his many aunts and uncles. He loved to have his legs and arms massaged by his grandfathers. He got plenty of cuddles from his grandmas. DJ was most content when he could sit in the arms of one of his parents.
Despite some heartbreaks along the way, we counted our days with DJ as blessings, especially when we got a smile from him. He is the love of our lives.
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| TAY-SACHS DIAGNOSIS
DJ appeared completely normal at birth. We first noticed a potential problem when DJ was about ten months old. At that time, he wanted to stand but could not support weight on his right foot when he pulled himself up. He was diagnosed with a developmental delay and started physical therapy once a week. This developmental delay showed no improvement by his first year checkup, so we went to see a pediatric neurologist. An MRI revealed some abnormalities in his brain. By the time he was 16 months old, despite both physical and occupational therapy, his motor skills had regressed to point that he could no longer sit unassisted. His startle response to sharp noises worsened. It was a long, heartbreaking summer of testing and waiting.
When he was 18 months old, an ophthalmologist found "cherry-red spots" in the back of his eyes, an indication of Tay-Sachs disease. By October 1998, it was confirmed that DJ had infantile Tay-Sachs disease and that we were both carriers. Visit
Tay-Sachs disease for further
information about the progress of the disease, carrier screening and additional links.
There are many children of different backgrounds affected by Tay-Sachs Disease. If you are interested in hearing more personal stories about some of DJ's friends, please go to the section entitled Tay-Sachs Friends. Some of DJ's friends have a disease that is very similar to Tay-Sachs, called Sandhoff Disease. We have added a link to their stories under
Sandhoff Friends.
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ANYONE CAN BE A CARRIER . . .
Today, most patients are seen in families with no prior history of the disease because the recessive gene can be carried without being expressed through many generations. Carrier screening and genetic counseling have made this disease rare in those at known risk. While there are certain populations at higher risk, anyone can be a Tay-Sachs carrier. A reporter from a local newspaper interviewed us because an estimated 2/3 of the cases today are diagnosed among non-Jewish children. This article, which focused on carrier screening, appeared in the Daily Herald on January 17, 2000. In our case, DJ's father was born in Taipei and is of Chinese ancestry. DJ's mother was born in Tokyo, and is half German and half Japanese.
Unfortunately, there are children with Tay-Sachs disease all over the world. Look at the link called
international friends to learn about children in other countries and international organizations that help children with metabolic disorders and storage diseases.
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CARING FOR DJ
As the disease progressed, we had to learn how to care for a terminally ill child. At first, we kept searching for the perfect guidebook. However, there aren't any parenting books that can tell you what to expect in this situation. Our main source of information and comfort has been other parents that we met through the Parent Peer Group maintained by the National Tay-Sachs and Allied Diseases Association (NTSAD) here in the United States. We especially enjoy attending the annual family conferences sponsored by NTSAD. Find out more about the activities of the 2001 Family Conference in Florida by going to the Conference page.
We included a description of daily life with DJ called
caring for DJ at home. Our tips are based on our personal experiences with a neurological illness. There are 4 subsections: 1) playtime; description and pictures of DJ's physical therapy, water therapy, and massage; 3) the basics of day to day care from constipation to equipment, positioning, sleeping, skin/hands care, and oral care; 4) note on equipment for kids with special need like wheelchairs, bath seats etc.; 5) DJ' nutrition from oral feeding to long term options; and 6) our thoughts on medication and respiratory concerns. There are links to additional resources for home care.
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