The Gregory-Arritola Family

Resourceful Links

About Trisomy 13 and Trisomies	What is Patau's Syndrome? Trisomies and Genetics Summary of Info on Trisomy 13
Negative Prenatal Diagnosis	You are Not Alone!   Perinatal and Neonatal Support for Difficult Diagnosis for unborn or infant children   Emmanuels Foundation is available in the communities where families receive a difficult diagnosis of their unborn or infant child and brings awareness of the support that is available to families facing a rare or difficult diagnosis.    Emmanuels Foundation offers a broad overview of services that support family’s social, emotional, medical, financial and spiritual needs for families who request services.  Their vision is to increase access and utilization of appropriate coordinated case for our nation’s tiniest of citizens.  Emmanuels Foundation supports families in a pregnancy or with a child having a rare or difficult medical diagnosis by helping to tap into support resources in their immediate area to meet specified needs in a timely manner.  Striving together building stronger communities to support families through critical issues, companion parents in their emotional journey and encourage parents to be their child's best advocate.    EF Printable Tri-Fold Brochure in PDF    To learn more about Emmanuels Foundation - feel free to contact them via e-mail.  Letter to Physicians treating mother/child with an Incompatible with Life diagnosis or treating child with chromosomal abnormalities.  Please realize the medical intervention or treatment for my child is …   I am working to try to find the best resoucres for parents who are experiencing a negative prenatal diagnosis.  Please don't simply rely on what you hear.  I have heard of many horrible stories where families felt (afterward) as if they had been mislead.    Seek for yourselves, find the source ... the truth is different from that which is typically written.  If you have been given a negative prenatal diagnosis, please review the section below on creating a birth plan.  It has links to many sites that will help you support your childs shortened life and be faithful to your humanity.  ... and I am available by e-mail or phone to just talk in confidence.    Trisomy 13 Family Support Prenatal Partners for Life!    There are few things more frightening in life than finding out your baby may not be healthy. We are parents who have been through similar circumstances and we want to offer our support. We are here to help you; you are not alone!
Birth Planning,   Patients Plan of Care Conference Resources   and End of Life Issues	In making your childs birth plan, in the case of a Trisomy 13 diagnosis, you may want to peruse the following resources to find material your medical community will respect to support the decisions you make about your childs care.     - Hippocratic Oath - Old versus Modern definitions    - Rights of a Child according to the Geneva Declaration Christian Catholic Catechism (2276 - 2279)  Sick or handicapped persons should be helped to lead lives as normal as possible.   Euthanasia - Definitions explaining euthanasia is a controversial issue because of conflicting religious and humanist views.  Declaration on Euthanasia - Today it is very important to protect, at the moment of death, both the dignity of the human person and the Christian concept of life, against a technological attitude that threatens to become an abuse. Thus some people speak of a "right to die," which is an expression that does not mean the right to procure death either by one's own hand or by means of someone else, as one pleases, but rather the right to die peacefully with human and Christian dignity.   "As for those who profess other religions, many will agree with us that faith in God the Creator, Provider and Lord of life--if they share this belief--confers a lofty dignity upon every human person and guarantees respect for him or her."   Charter for Health Care Workers   This publication fills a gap which has been clearly observed not only in the Church, but by all those identifying with the Church's primary task to advance and defend life.   The extraordinary progress of science and technology in the immense field of health policy and care have made bioethics, or the ethics of life, a discipline in its own right. Hence the need - rigorously responded to by the Charter for Health Care Workers - to provide an organic, exhaustive summary of the Church's position on all that concerns affirming the primary, absolute value of life in the health field - of all life and of the life of every human being. PLANNING: In creating your child's birth plan you may want to view our section on Trisomy 13 Planning Pages for more information that will walk you through the steps in Creating a Birth Plan or Preparing for a Plan of Care Conference.  Pro-Life and Pro-Choice: End of Life Issues
Prenatal Grieving, Survivorship Coping and Bereavement Resources	Living with Trisomy 13: Survivors experiences Be Not Afraid - An online outreach to parents who have received a poor or difficult prenatal diagnosis.   A Place to Remember - Uplifting support materials and resources for those who have been touched by a crisis in pregnancy or the death of a baby Trisomy E-mail Support Group Family to Family Support Links for Families Coping with Trisomy
Articles, FAQ'S & questions most are afraid to ask!	Why Carry a Dying Child? Why Carry a Dying Child:  A Mother's Perspective How to help a grieving friend Perinatal Hospice: Giving Terminally Ill Babies and Their Families an Alternative to Abortion. Suggestions for PARENTS of UNBORN Babies with Trisomy 13 Suggestions for FAMILIES AND FRIENDS of Babies with Trisomy 13
Resources for Georgia Residents	Trisomy 13 Post Pardum Resources for Georgia Residents   FOCUS - Families of Children Under Stress  Babies Can't Wait (BCW) is Georgia's statewide interagency service delivery system for infants and toddlers with developmental delays or disabilities and their families. BCW is established by Part C of the Individuals with Disabilities Education Act (IDEA) which guarantees all eligible children, regardless of their disability, access to services that will enhance their development.   The Individuals with Disabilities Education Act (IDEA) is a federal law ensuring services to children with disabilities throughout the nation. (IDEA) guarantees all eligible children, regardless of their disability, access to services that will enhance their development.  SO if you are interested in getting a specific goal incorporated into your Childs IEP, it would behoove you to know how these laws can help you support your educational goals.  Part C is for Infants and toddlers with disabilities (birth - age 2) and their families receive early intervention services under IDEA.  Part B if for Children and youth (ages 3-21) to receive special education and related services under IDEA. States and territories expand and further define the federal regulations by crafting their own laws and regulations. Schools, districts, and state offices of special education must comply with the federal special education law and regulations as well as their own state’s policies, including state regulations. To find help developing goals for your Childs IEP, click thes link above and go to the bottom of this URL to find links to "State Special Education Regulations” and “States' Part C Rules, Regulations and Policies: On-line resources”.  Not all states are listed.  Get out your reading glasses and ask for help if are trying to meet a specific goal or have it supported by a law or regulation.  Educational Advocates are available to help if you are having a difficult time as you learn the ropes.  More to Come on Developing IEP's SOON Georgia PINES, which stands for Georgia Parent Infant Network for Educational Services, is a statewide home intervention program available to families of infants and toddlers with sensory impairment, 0-5 years of age.  All services are free to families. In order for a family to be eligible for services from Georgia PINES, their child must have either a visual or hearing impairment, or both.    Georgia Academy for the Blind - quality education services to Georgia’s students who have visual impairments or multiple disabilities. The Marcus Institute - Turning Disabilities in Possibilities - Finding effective services for children with disabilities and learning problems can create a constant struggle for their caregivers. The Marcus Institute reduces the stress of that search by offering the most comprehensive diagnosis, therapy and care management possible for a wide range of disabilities and learning problems. The Atlanta Alliance on Developmental Disabilities (AADD) mission is to build communities of support, acceptance, and opportunity for children, adults, and families living with developmental disabilities.    Persons concerned about disability services and supports throughout Georgia may visit the Georgia Legislation Overview site hosted by AADD. Georgia Advocacy Office - GAO has been designated by Georgia as the agency to implement Protection and Advocacy within the state.  Its mission is to work with and for oppressed and vulnerable individuals in Georgia who are labeled as disabled or mentally ill to secure their protection and advocacy. Governor's Council on Developmental Disabilities - The state planning council is charged with creating systems change for people with developmental disabilities and their families to: increase independence, inclusion, integration and productivity for people with disabilities. Georgia Department of Education, Division for Exceptional Students - This web site for Special Education in Georgia contains information on programs and services and special education laws. Georgia Parent Mentors - Parent mentors are moms and dads of children with special needs who serve as a liaison between parents and schools.  They work within the school system to nurture communication and try to build bridges between home and school. Parent to Parent of Georgia provides support and information to parents of children with disabilities. One of the most meaningful sources of support are other parents who have experienced parenting a child with a disability.  Make contact with your local office and they will put you in touch with a family in your area experiencing the same or similar diagnosis.  Parents Education Parents and Professionals (PEPP, Inc.) is a 501 c3 non-profit corporation dedicated to improving the quality of life dreams for all families with disabilities by providing the most up to date resources on activities and educational events throughout the state of Georgia and on a national level. Bobby Dodd Institute - Most Georgians associate Bobby Dodd with Georgia Tech and his phenomenal years coaching winning football teams. His work on the gridiron inspired generations of Tech football fans, but for adults with disabilities, he has become even more of a legend. In the 1960s, Dodd worked to ensure that Atlantans with disabilities were given the opportunity to fulfill their potential. He became their voice and rallied others to speak out on their behalf. He urged the community to "wake up to the tremendous potential and desire to work of our disabled brothers and sisters. The more you see of persons with disabilities," he said, "the more you care about them and the more determined you become to do all in your power to see that they get the best possible chance in life." Resources Outside of Georgia   FLORIDA: The Florida Directory of Early Childhood Services (Central Directory) has provided services to thousands of families and providers seeking advocacy, education, training, resource and referral, and information on disability services available in their communities.   GLOBAL: Family Village is a global community of disability related resources.    VIRGINIA:  The Infant and Toddler Connection of Virginia is a system of services and supports designed to promote the greatest possible developmental outcomes for Virginia's infants and toddlers with developmental delays or disabilities.  The system has been established in accordance with the Individuals with Disabilities Education Act (IDEA), Part C - Early Intervention.     ADD MORE?   If you would like to refer a resource that may benefit others, please contact our adminsitrator.
Religious Resources	You have life's tough questions?   Chances are - they've already been answered  ... A famous person once said, "Seek and you shall find" ...    I invite you to explore places where lifes toughest questions are given explanation. The Catechism Online - easy to look through table of contents that help guide the reader to passages that explain fundamentals of christianity and most frequently asked questions about our faith.  This is truly a point and click site by topic.  For reference to a specific paragraph of the catechism, use the link below for a different online version that makes searching by paragraph easier.  Life in Christ: Catechism #2280 Everyone is responsible for his life before God who has given it to him. It is God who remains the sovereign Master of life. We are obliged to accept life gratefully and preserve it for his honor and the salvation of our souls. We are stewards, not owners, of the life God has entrusted to us. It is not ours to dispose of. THE BIBLE Online Todays Scripture readings around the world in the Catholic Church Virtual Rosary The Vatican PHATMASS:  Living to defend the faith given to us by Jesus Christ.  Recognizing we are in a constant battle of good vs evil, we ask for intercession.   Home to popular free Catholic CDs, audio tapes, and books, Catholic news and commentary, and the Best Catholic Links on the web. Worth a visit.
Suggested Reading	COMMUNICATION IN PATIENT CARE   Felice E. Miller, Ph.D., Effective Communication: Getting the Best Health Care for Your Child.  August 9, 2006 URL: http://www.madisonsfoundation.org/content/3/2/communication.html   Stephanie J. Lee, Anthony L. Back, Susan D. Block and Susan K. Stewart, (2002) Enhancing Physician-Patient Communication, Hematology Online, August 9, 2006 URL: http://www.asheducationbook.org/cgi/content/full/2002/1/464   By Karen R. Sepucha, Jeffrey K. Belkora, Debasish Tripathy, Laura J. Esserman, (2000) Building Bridges Between Physicians and Patients: Results of a Pilot Study Examining New Tools for Collaborative Decision Making in Breast Cancer, Journal of Clinical Oncology, Vol 18, Issue 6 (March), 2000: 1230-1238 © 2000. August 9, 2006 URL: http://www.jco.org/cgi/content/abstract/18/6/1230   By Steven Parker, Barry Zuckerman, Marilyn Augustyn, Developmental And Behavioral Pediatrics: A Handbook for Primary Care (2005) Lippincott Williams & Wilkins. August 9, 2006 URL: http://books.google.com/books?vid=ISBN0781716837&id=YCH-RW2rj9oC&printsec=toc&dq=Korsch,+B.,+and+Harding,+C   M. A. Stewart, Effective physician-patient communication and health outcomes: a review, Canadian Medical Association Journal, Vol 152, Issue 9 1423-1433, (1995) Canadian Medical Association. August 9, 2006 URL: http://www.cmaj.ca/cgi/content/abstract/152/9/1423   By Moira A Stewart, Judith Belle Brown, W Wayne Weston, Ian R McWhinney, Carol L McWilliam, Thomas R Freeman, Patient-Centered Medicine: Transforming the Clinical Method, Sage Publications, 1995. August 9, 2006 URL: http://books.google.com/books?id=96m4ncdHKoUC&printsec=frontcover   Korsch, B., and Harding, C. The intelligent patient’s guide to the doctor-patient relationship Learning how to talk so your doctor will listen. New York: Oxford University Press, 1997.   MORE TOPICS COMING SOON!