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Dixie Lawrence Tafoya and Madison Lawrence
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My great-niece, Kaya Sunshine, was born on December 23, 1996. She was born with Down syndrome, also known as Trisomy 21. It was at that moment that I, along with her parents Alissa and Jared and other family members, embarked on a voyage to find out just what it means to have Down syndrome. What follows is the result of nearly three years of information seeking.
The following pages have been compiled for the purpose of helping those who have an extra 21st chromosome, Trisomy 21, through the use of Targeted Nutritional Intervention (TNI). Additional sections of the book have been included to cover various therapies and medical issues, and parent helps and testimonials which address issues common in Down syndrome.
I wish to thank all of the many contributors to this book. I owe a huge thank you to my husband Kevin, who has expressed daily, immeasurable amounts of patience and support for this project. A debt of gratitude needs to be given to "my computer guy," Kent Killam, who understands all too well about disabilities as well as how to keep my computer going! (http://www.topendpc.com) I wish to thank all parents of children with Trisomy 21 and specifically all the wonderful people on the Internet Listservs, DSTNI Onelist and DS-Nutrition. These families have been an incredible family to me, giving freely of their time, experience, knowledge, and support. It was Linda Drake who first gave me the idea of doing this book when she commented one day about putting together a booklet containing information obtained from the Internet so that she could have something handy to give to others seeking such information. Among the many who give immeasurably of themselves are Jenny Marrs, Nikki Schmid, Ann Marsilio, Tamera Ragan, Victor Bishop and all the other moms and dads who supplied testimonials and advice. I wish to convey my immense gratitude to Deborah Saxton who has been both instrumental and inspirational in making this book a reality. In addition, this edition of the book shows the tremendous amount of dedication, understanding, and professionalism from Miriam Kauk, Ginger Houston-Ludlam and Linda Drake as editing assistants. Thank you so much ladies for your participation, your caring for this project and your dedication to seeing that this information be made available to all who need it. A very special thank you needs to be said to Dr. Lawrence Leichtman and Dr. David Swenson, who have not only committed themselves to helping Down syndrome children through research, but who have also dedicated countless hours to helping these children by giving freely of their knowledge and wisdom.
And of course, there is Dixie Lawrence Tafoya. The words "thank you" do not come close to covering the depth of gratitude felt for this incredible person. Through her love and dedication as a mother and her determination to provide a better life for her daughter, she went well beyond the scope of her own family and brought hope, health and even life to so many children born with this disease. Someday a little girl by the name of Kaya Sunshine will be able to say, "Thank you, Dixie," in her own clear, strong voice. This is no small thing!
Aunt Gini Mullaly
to Kaya Sunshine, three years in December, 1999
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My inspiration came with the birth of my best friend’s son, my godson, Lucas Tyler James, on February 12, 1997. The local medical community managed to turn what should have been a very happy day into a devastating one. They painted a grim picture of Lucas’ future and went on to say that because his condition was genetic, it was "fixed" from birth and no medical treatment was possible.
Unable to face my friend with platitudes and cliches, I began searching to learn all I could about Down syndrome. Within hours of Lucas’ birth, I was able to report to my friend that kids with DS are more like other kids than not. Most run, jump, play, go to school, argue about their clothes, fight with their siblings, and are contributing, valuable members of their families and communities! Finally, some good news!!
I also learned that preliminary findings from Trisomy 21 Research Foundation, Inc. indicate that rather than being a fixed condition, many of the deleterious effects commonly associated with DS are due to metabolic imbalances and are progressive and degenerative in nature. Trisomy 21 Research Foundation, Inc. also feels that some of the conditions associated with DS can be ameliorated through the use of Targeted Nutritional Intervention, (also known as TNI), under the supervision of a qualified physician.
No longer blinded by an outdated, bleak prognosis, it is our goal to educate and raise public awareness. TNI offers many the possibility of a healthier future, and when combined with individualized developmental and educational opportunities there is no limit to what our children can achieve. We cannot keep our light under a bushel, we must share this information with all who may need it.
This compilation is an attempt to make the search for information easier for others, and to possibly enrich the quality of their lives. It is a labor of love that could not have come about without the contributions of caring and dedicated individuals, too numerous to name, who gave freely of themselves.
From the beginning, my inspiration has been from Lucas. Because of him I can now name hundreds of other children who, like Lucas, have DS, and who, like Lucas, continue to defy the medical predictions made for them at birth! My dedication to this effort also extends to those as yet unable to avail themselves of this protocol, for whatever reason, and to those yet to be born. It is for them that we must go forward with research. This is history in the making!
Deborah Saxton-Bolt
to Lucas Tyler James, 3 years in February, 2000
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DISCLAIMER
The guidelines, suggestions, and help offered here are compiled from both scientific and parental sources. These sources are intended for informational purposes only and should not be substituted for a competent doctor’s medical advice. Some of the information is anecdotal in nature and relies on the opinions and observations of various parents who have children with Down syndrome, as well as medical experts involved in their child’s care. As such, it is imperative to contact your own physician prior to implementing any protocol.
This information provided is intended as a general help guide and should not be relied upon as being either comprehensive or completely current. TRI (Trisomy 21 Research Foundation, Inc.), its Scientific Advisory Board, nor any member thereof, nor anyone from any of the other sources contained herein, assumes any liability for any supplement or opinion given herein.
Kaya Sunshine Garner