Provision of these links and sources does not constitute SOFT’s endorsement of the sources or the information they provide. Please report broken links to the Website Content Manager.
A great deal of information about trisomy and other chromosome disorders is available from the U.S. National Institute of Health’s National Library of Medicine. Also available is an extensive Glossary of Genetic and Medical Terminology.
Ramps.org Launches An Online Directory of Free Ramp Builders: http://www.ramps.org/[ramps.
org] Ramps.org has created a directory of community service organizations that provide free or low cost ramp building services for members of their community who cannot obtain them on their own for financial reasons. Ramps.org is a free resource providing information on home accessibility and ramping systems. HandiRamp and the HandiRamp Foundation maintain and provide funding for the Ramps.org website as part of their community service efforts. The mission for Ramps.org is to create access for everyone, regardless of the ability to pay.
This information, submitted by SOFT members, might be of assistance. If your child is using equipment that you would be comfortable recommending to others please let us know and we will add it to this page.
Rifton Activity Chair 870: Lynne Stockman, mother to 12 year old Lyndsay who has trisomy 18, says the Rifton Activity Chair 870 is a really neat chair to feed in and do activities. The Rifton Activity Chair is a positioning chair that provides versatile and adaptable seating for clients…click here to read about it: Rifton Activity Chair, a revolution in active seating.www.rifton.com/products/sitting/activitychair/
eSpecial Needs, an equipment company suggested by another mom, retails strollers, wheelchairs, ramps, strollers, pushchairs, stroller-style pushchairs, and other equipment. http://www.especialneeds.com/
Beds – Here is a selection of Beds for special needs children
Snug Seat, a car seat recommended by Kristie Lint. “We LOVED it. It was perfect for him and it went up to over 100 pounds as best I remember so he would have been able to use it for years.” http://www.epages.dk/r82/68/164/
Tumble Forms® Jettmobile® – Terre Krotzer, mother of 12 year old Krissy, says Krissy does great on this in therapy. She uses it sitting and pushes with her feet. http://www.pattersonmedical.
Medical or Surgical Information
Anti-seizure medication side effects:
Seizures: Boston Children’s Hospital provides explanations at: http://www.childrenshospital.
Conditions involving chromosome 18: The Chromosome 18 Registry has an excellent explanation of the various conditions that arise due to a missing or extra piece of chromosome 18. This may be found here: http://www.chromosome18.org/TheConditions/tabid/125/Default.aspx
Congenital heart defect corrective surgeries-Overview. This article is available in English or Spanish and provides a brief explanation of specific cardiac repairs and can be seen at the University of Maryland Medical Center Website: http://www.umm.edu/ency/article/002948all.htm
Dandy-Walker Alliance. The exact cause of Dandy-Walker Malformation (DWM) is not known but a few SOFT families mention DWM as a part of their child’s medical findings. DWM is sometimes associated with hydrocephalus. Website: http://www.dandy-walker.org/
Donate Life America. Under the right circumstances persons affected with trisomy conditions can be organ and tissue donors. “Donate Life is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation.” Quote from Website: www.donatelife.net
Eye care: sunglasses. Kidz Banz and also Baby Banz are Australian-designed products. They have polycarbonate frames and lenses and an adjustable neoprene band to fit the head. These glasses are clinically tested to meet UV block-out requirements of ANSI Z80.3-1996. They are advertised for 2-5 year-olds but the adjustable band would likely make it comfortable enough for our kids who are younger or smaller. The cost is about $40 per pair and these can be found in some eye-glass stores or on-line. SOFT’s eye care specialist, Dr. Steve Cantrell, OD, approved adding this information to the SOFT website. See them at www.banzworld.com.
Hearing Loss: Eleven year old Gabby Authurs (t14m) received the Baha Softbanddevice on 8/13/13. This is called the Cochlear™ Baha® System. See the NIH PubMed abstract about this device here: http://www.ncbi.nlm.nih.gov/pubmed/15911017 https://www.facebook.com/
Trisomy18.Trisomy13.Awareness. SOFTrelatedDisorders/posts/ 194981527344102
Hearing Loss: Child-friendly Ponto Softband (for babies and young children). It is specifically designed for children who cannot be assisted with conventional hearing aids. http://www.oticonmedical.com/
Medical/YourTreatment/The% 20treatment%20process/ Softband%20solution.aspx? gclid=CI6Xu87C_ bgCFcuf4AodBxwAjg
Meckel’s Diverticulum Information. http://my.clevelandclinic.org/
childrens-hospital/health- info/diseases-conditions/ digestive-disorders/hic- meckel’s-diverticulum.aspx
Omphalocele or Gastroschisis anomalies and treatment: Excellent explanation and must-see video from Children’s Hospital of Philadelphia http://www.chop.edu/service/
fetal-diagnosis-and-treatment/ fetal-diagnoses/omphalocele. html
Taking your child to the ER: Making It Less Traumatic By Douglas J. Segan, MD. Taking your child to the emergency room can be a daunting and difficult experience…this article includes helpful tips on taking a special needs child to the ER. Permission to link provided by Joe Graedon of People’s Pharmacy. Website: http://www.peoplespharmacy.com/2012/01/18/taking-your-child-to-the-er-tips-for-making-it-less-traumatic/
Tracking Rare Incidence Syndromes Website http://web.coehs.siu.edu/Grants/TRIS/
A combined total of 361 surveys (about rare incident conditions) were completed during February 1, 2007 to September 1, 2011. SOFT families have participated in Debbie’s studies. Contact Debbie Saunders Bruns, PhD, Southern Illinois University, Carbondale, IL firstname.lastname@example.org
Nutrition and Feeding Aids
Organs: Small and Large Intestines - (an explanation of this portion of the digestive system; a link to the Children’s Hospital of Pittsburgh) http://www.chp.edu/CHP/organs+
The Pacifier Activated Lullaby (PAL) is a pressure sensitive pacifier developed by a music therapist as a teaching tool to help premature infants learn to suck. www.rinr.fsu.edu/summer2005/features/babyspal.html
Probiotics to Ward Off Colds – The People’s Pharmacy®Probiotics may help children as well as grownups fight off colds and other respiratory infections. Permission to link provided by Joe Graedon of People’s Pharmacy. Website: http://www.peoplespharmacy.com/2011/09/22/probiotics-to-ward-off-colds/index.php
SHS Nutrition This site has been designed to help you understand more about Advanced Medical nutrition and its related conditions. You can use this site to search through our extensive range of articles, references, clinical studies and product information on Advanced Medical Nutritional Therapies. Website: http://www.shs-nutrition.com/conditions/
Special Needs Feeder (new name for Haberman feeder). This special nipple for bottle feeding premature infants and also infants with cleft palate is available through Medela Inc. Medela sells breast feeding supplies but also has related products such as the special needs feeder. Several SOFT families have reported success using this nipple. It can only be ordered by phone at 1-800-435-8316 or is sometimes available through medical supply companies or pharmacies. See a video explaining the feeder at Mandy Haberman inventor of the Haberman Feeder
Now I Lay Me Down to Sleep foundation (NILMDTS) administers a network of almost 6,000 volunteer photographers in the United States and twenty-five international countries. At a family’s request, a NILMDTS Affiliated Photographer will come to your hospital or hospice location and conduct a sensitive and private portrait session. The portraits are then professionally retouched and presented to the families on an archival DVD or CD that can be used to print portraits of their cherished baby. Our entire network of affiliated photographers graciously donates their time and talents to our families and we are proud to be able to offer our services at no cost. Video of Trisomy Children Website: www.nilmdts.org
Law Help Helps low and moderate income people find free legal aid programs in their communities, and provides answers to questions about their legal rights. Website: http://lawhelp.org
Registered Disability Savings Plan for Canadian families with a disabled childwebsite: http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/rdsp-reei/menu-eng.html
Registered Disability Saving Plan (RDSP) (Canada) Website: www.cra-arc.gc.ca Information in French or English on how to set up and establish an RDSP.
Resource Repository is an electronic collection of documents, links, audio, and video files, that relies on contributions from the community in topic areas such as newborn screening, family health history, genetic testing, reimbursement, research, and drug development. Website: www.resourcerepository.org
National Disability Rights Network (NDRN) is the non-profit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). There is a P&A/CAP agency in every state and U.S. territory as well as one serving the Native American population in the four corners region. Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
Administration on Intellectual and Developmental Disabilities (AIDD) the US Department of Health and Human Services (HHS) Click blue map to see the 57 Protection and Advocacy systems (P&As) across the United States and its territories that are dedicated to the ongoing fight for the personal and civil rights of individuals with developmental disabilities.
Waivers | Medicaid.gov Waivers are vehicles states can use to test new or existing ways to deliver and pay for health care services in Medicaid and the Children’s Health Insurance Program (CHIP). State waiver program names and links are provided on this site. www.waivers/medicaid.gov
Books about trisomy 18 and trisomy 13 can be ordered from the SOFT Shop at the Support Organization for Trisomy 18 or 13 and Related Disorders website. These are inexpensive, and all proceeds from the sale of these books go to SOFT.
Book by SOFT parent Sheryl Crosier “I Am Not a Syndrome – My Name is Simon” is now available from publisher All Star Press - Books that Change Lives. It is offered in .pdf and all online e-book formats and in paperback form from the publisher’s website. A portion of the proceeds from every sale of this book will go to SOFT.
Exceptional Parent (EP) This magazine is helpful for parents of a child or young adult with special needs. It provides family stories, an annual resource guide of organizations for all disorders, and discusses products, and services. Website: http://eparent.com
Heritage Makers. Story booking is the unique Heritage Makers process of combining photographs with personalized writing into one or more professionally bound books. email@example.com
(Updated 8/14/2013 fb)