MARCH IS TRISOMY AWARENESS MONTH
Trisomy 21, Down's Syndrome, has had support of the medical community for some time now, but that is not the case with Trisomy 18 (Edward's Syndrome), Trisomy 13 (Patau's Syndrome), and any number of other chromosome trisomies and deletions. I want to list resources that have been so important to me in this journey, sources that provide hope and help.
BACKGROUNDWhen I was pregnant with Rebekah in 2008-09, we had perinatal hospice support (which was very helpful in emotionally preparing us) and had even planned her funeral before she was born. Rebekah survived birth and we took her home on hospice care. I searched the internet for stories of hope. I found a few blogs of kids living with trisomy 18, but there really were not that many positive online sources to be found.
I joined the facebook community at that time, not willing to give up hope for our child. I began connecting with trisomy 18 families from around the world, and started a facebook group called 'Trisomy 18 Mommies' that helped us connect even faster. Of course, there are dozens of trisomy-related groups now, but this was my window into a new world of possibilities for our daughter.
As I learned more about other miracle children and as Rebekah solidified what we already knew - she was not a 'vegetable' or an 'unfortunate mistake', it didn't take us long before we ditched 'palliative care' for our daughter, and started treating her medical needs as we would any of our other children.
Love it or hate it, FACEBOOK has provided us with an EXPLOSION of online connections and resources for the trisomy community. Once on, you can be quickly connected with hundreds of families sharing the same diagnosis and having the same medical conditions as your child. We have been able to utilize these connections to get medical support for several children that were refused medical care, and we have also been able to use these connections to hook families up with doctors that are willing to provide medical interventions. Most of all, the networking of parents has provided an INCREDIBLE wealth of information - trisomy families are being more aggressive and proactive as a result. And I have seen more HELP given to families of living trisomy kids through these connections than through any foundation or organization out there.
I have used this online community of friends along with my list of resources below to help me in this journey. These resources will provide positive support throughout all stages of this journey. But daily contact with others who understand your pain and joys in this journey is critical! I encourage anyone finding this blog to get on facebook and join the largest and most active group or trisomy families anywhere!
These are listed in alphabetical order. This is, by no means, a definitive list. And while these are great resources, the BEST resource is the online facebook community because it is not subject to any one organization's limitations, red tape, or politics.
- Be Not Afraid - This is an online outreach to parents who have received a poor or difficult prenatal diagnosis. Be Not Afraid Facebook Page
- Facebook Groups
- Trisomy 18 Mommies - Originally started for trisomy 18 moms, the list now has some dads and some other related disorders like trisomy 13.
- Trisomy 18/13 Journey - Created after trisomy 18 mommies to pull in other families and share 'journey' experiences.
- Faces of Trisomy - Created to raise awareness for all kinds of trisomy (except 21 - Down's Syndrome). Lots of encouraging pictures here!
- SOFT - Support Organization for Trisomy
- Trisomy Awareness 2011 Facebook Photo Album - Thanks to Alisha Hersman-Hauber for the amazing photos and blurbs about kids like Rebekah, redefining 'incompatible with life'! These will eventually become part of a living with trisomy 18 site!
- Hope for Trisomy 18 & 13 - Funding research, promoting education, raising awareness, and changing lives. Also links to Gemma's Bears (gifts for unborn/newborn trisomy 13/18 babies) and Payton's Bearts (Stuffed Bear gift for living trisomy 13/18 birthdays)
- Iron Man for Kids - This is an organization that seeks to bring awareness and support for trisomy 13 and 18 families through participation in, and hosting of, sporting events. This family doesn't even have a trisomy child, but they have done a lot for the trisomy community and awareness!
- Living with Trisomy 13 - Offering support and resources to trisomy 13 families and an online directory of Trisomy 13 children! Living With Trisomy 13 Facebook Page
- Molly Bear Foundation - Provides supplemental financial assistance to families of Trisomy 18 kids. Molly Bear Facebook Page
- Noah's Never Ending Rainbow - This is a national (USA) trisomy organization with a mission to educate, advocate, raise public awareness, promote strategic alliances, and assist families. Noah's Never Ending Rainbow Facebook Page.
- Now I Lay Me Down To Sleep - Remembrance photography provided for free for families with adverse prenatal diagnosis or infant death. NILMDTS Facebook Page
- Prenatal Partners for Life - Support and encouragement for families carrying to term with an adverse prenatal diagnosis and support for raising special needs children. Prenatal Partners for Life Facebook Page
- Rowan Tree Foundation - Helping families heal after the loss of a precious child. Rowan Tree Foundation Facebook Page
- SOFT - Support Organization for Trisomy 18, 13, and Trisomy Related Disorders - This is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome trisomy disorder, and education to families and professionals interested in the care of these children. You can purchase books on care of trisomy kids (great resources for new parents!) and they have an annual conference where families get together and support each other. SOFT does have chapters in other countries so this is the one related nonprofit out there that is truly a global organization. They are also tied into the hospital systems in the US, so information published here gets out to the hospitals. Please consider joining this organization! S.O.F.T. Facebook Page
- TRIS and Living With Trisomy - Ongoing research project / database for Tracking Rare Incidence Syndromes that also maintains links to helpful groups for every chromosome.
- Trisomy 18 Foundation - Provides support and information to trisomy 18 families. Trisomy 18 Foundation
- Trisomy Online - Email lists that connect you internationally with other families. I am on the tri-med list and have learned a lot from the other families. I don't personally participate in a lot of the conversations, but it is a good resource to see how medical issues are handled internationally.
- Trisomy 18/13 Awareness T-shirts - Thanks to Katie Weaver for her awesome designs! You can buy lots of trisomy awareness items and proceeds go to Noah's Never Ending Rainbow. The designs on this blog entry are from her and you can find a lot more at:
- You Tube - there are MANY videos showing trisomy 18 and 13 kids hitting milestones and thriving! Just search for something like trisomy hope in the you tube search bar and you will get positive videos. Stay away from the school project videos filled with erroneous information.