The 13th-15th Days

Shared from Hope for Trisomy on Facebook. Please visit our page for links to photos, stories, and more!

Day 13:

On our 13th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about 1 of the 3 MOST COMMON trisomies...TRISOMY 13 (PATAU SYNDROME), with Trisomy 18 (Edwards syndrome) and Trisomy 21 (Down syndrome) being the other two. Trisomy 13 (also called Patau syndrome) is a genetic disorder in which a person has three copies of genetic material from chromosome 13, instead of the usual two copies. Rarely, the extra material may be attached to another chromosome (translocation).http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002625/And...here is a link provided by the SOFT Organization about TRISOMY 13 FACTS.http://trisomy.org.s113588.gridserver.com/wp-content/uploads/2012/10/Trisomy-13-Facts-8-20-12.pdf Also, for the families caring for a child diagnosed with Trisomy 13, the SOFT Organization has a book provided at this linkhttp://trisomy.org/shop/care-of-the-infant-and-child-with-trisomy-18-or-trisomy-13/ and a guidebook provided at this linkhttp://trisomy.org/shop/trisomy-13-a-guidebook-for-families/Share because you Care ♥

Day 14:

On our 14th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about TELOMERES. Telomeres are repetitive stretches of DNA located at the ends of linear chromosomes. They protect the ends of chromosomes in a manner similar to the way the tips of shoelaces keep them from unraveling. In many types of cells, telomeres lose a bit of their DNA every time a cell divides. Eventually, when all of the telomere DNA is gone, the cell cannot replicate and dies. White blood cells and other cell types with the capacity to divide very frequently have a special enzyme that prevents their chromosomes from losing their telomeres. Because they retain their telomeres, such cells generally live longer than other cells. Telomeres also play a role in cancer. The chromosomes of malignant cells usually do not lose their telomeres, helping to fuel the uncontrolled growth that makes cancer so devastating. Share because you Care. ♥

Gabby Arthurs, trisomy 14, took home the NC Miss Amazing Queen crown in Murphy, NC on 3/2/13 and is going to Nationals in Nebraska in August!

Day 15:

On our 15th day of MARCHING into TRISOMY AWARENESS MONTH, we are going to share about TRIPLOIDY. Triploidy is a rare lethal chromosome abnormality caused by the presence of an entire extra set of chromosomes. A fetus with triploidy has 69 chromosomes, rather than 46. Most studies seem to suggest that around two thirds of triploid pregnancies are boys, while around one third are girls. Triploidy is not the same as Trisomy. People with trisomy have a single extra chromosome, making a total of 47. Very occasionally, babies with triploidy are born and live for a few hours, days or weeks. One baby reported in the medical literature lived to 10½ months, but this is very rare. Two out of three pregnancies miscarry in the first trimester and almost all other babies die later or are stillborn. UNIQUE has a great explanation of TRIPLOIDY found here (http://www.rarechromo.org/information/other/triploidy%20ftnw.pdf ) Hope for Trisomy featured a beautiful baby boy, Castan, diagnosed with Mosaic Triploidy on our photo album TRI-KIDS. Castan lived on earth almost 8 months, and was a blessing to his family. Here is Castan's facebook pagehttps://www.facebook.com/BelieveInCastan Share because you Care. ♥

Castan had Mosaic Triploidy and lived an amazing 8 1/2 months.

Our Trisomy Community Has a Voice

Our Trisomy Community Has a Voice...
Children with Trisomy 13 and 18 and Their Families are Happy!

On 7/23/2012, a precedent-setting study was published in PEDIATRICS – the official journal of the American Academy of Pediatrics. The study consists of 503 invitations sent to families using social networks as support systems in the care and management of their trisomy 13 or 18 child.  An amazing 332 questionnaires were returned (87% response rate) representing 272 trisomy 13 or 18 children. I am proud to be one of those families!  

Why is this precedent-setting? 

• First of all, there are NO OTHER studies of trisomy 13/18 children represented by such a large sample group! 
• Second of all, this study will challenge the medical community to rethink how they manage families facing a diagnosis like trisomy 13 or 18.  

My personal hope is that the medical community will also start partnering with the real experts on trisomy – the PARENTS – to help make decisions in the care and management of future trisomy children. We are bringing together families worldwide through social networking, and working together to create resources that will give families the information they need to make informed decisions about their trisomy children. Some of this information is based off of the small number of medical studies (with small sample sizes) that have already been published on trisomy 18 and 13 children. But the majority of it comes from the actual experiences of hundreds of parents and family members involved in the direct care of a trisomy child. Some of this information is already being captured (and has been for years) through a project called TRIS (Tracking Rare Incidence Syndromes) and through the annual conferences and medical information collected through SOFT – Support Organization for Trisomy 18, 13, and Related Conditions. There are also several social networking groups on facebook and nonprofit trisomy organizations working together to create a Parent Experiential Database to summarize much of the knowledge learned and shared between trisomy parents dealing with complex health issues. The beginnings of this parent database will be captured by the end on 2012 on www.hopefortrisomy.org.  We hope this will also inspire the medical community to do more studies on our children, and to change the view that trisomy 18 and 13 children are incompatible with life and not worth the time or effort to give compassionate and potentially life-saving care.

As for the Pediatrics-published study, one of the most well-published academic neonatologists in the world (and a true humanitarian) posted about the study on his neonatal research blog. He offers EXCELLENT ADVICE (and a little criticism) to his colleagues. 

And here is just a brief look at how this new study has affected the news...

The Most News Seen on Trisomy 18 or 13 in Such a Short Time!
These are just a few of the pages and pages of references to the Pediatrics-published study...  

• The Canadian Press – Toronto (7/23/12): Parents of babies born with disabling anomalies report they enrich families
  “This study should have us stop and think about what decisions, for which children, have been made on the basis of misinformation,” says Francoise Baylis, a professor of bioethics and philosophy at Dalhousie University in Halifax. “The negative narrative needs to change. Parents’ experiential knowledge matters and should be available to expectant parents and new parents.”   
• Daily RX(7/22/12): Trisomy 13 and 18 children and their parents lead rewarding lives
• Deseret News(7/27/12): Parenting Severely Disabled Kids Can Be a Great Source of Happiness 
  "Regardless of the length of their lives, children with trisomy 13 or trisomy 18 — a chromosomal abnormality that can cause shortened lifespans and severe disabilities — not only led happy lives, but enriched the lives of their families, according to a new study published in the journal Pediatrics July 23."
• EurekAlert! (7/23/12): Children with trisomy 13 and 18 and their families are happy – Quality of life perceived by parents is better than that predicted by physicians
• Europe Med (7/25/12): Children With Trisomy 13 and 18 Are Happy Despite Poluar Beliefs
• Fox News (7/23/12): Parents, docs may clash on quality of kids’ lives
• HuffPost Living Canada: T13,T18 Babies Born With Congenital Anomalies Reportedly Enrich Families
  "A new Canadian study drawing on the experiences of parents paints a dramatically different picture than that in medical literature of the short lives of infants born with the congenital anomalies Trisomy 13 and Trisomy 18.Medical textbooks are grim and bleak about babies born with genetic codes considered "incompatible with life." But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it."
• JAAPA (Journal of the American Academy of Physician Assistants) and MPR (Monthly Prescribing Reference)(7/23/12): Study Examines Effect of Trisomy 13, 18 on Families, Providers
• Medical News Today (7/24/12): Children Eith Trisomy 13 and a8 Are Happy Despite Poluar Beliefs
• Medline Plus (7/23/12): Parents of Severely Disabled Kids Say They Enrich Their Lives 
• Montreal Gazette (7/25/12): Parents of kids battling rare disorder Trisomy 13 fight back – Doctors take approach to condition, they say
• Neonatal Research blog - Dr. Keith J Barrington (neonatologist and clinical researcher and chief  of service at Sainte Justine University Health Center in Montréal.): “Our children are not a diagnosis”: the family experience of trisomy 13 and 18  Dr. Barrington includes a list of guidelines that neonatologists should follow. "This study points out the uniqueness of each of these children and the heterogeneity of condition and survival. They emphasize that we cannot be definite about the duration of survival or the capacities of an individual. They conclude: Parents who engage with parental support groups may discover an alternative, positive, description about children with T13-18. I conclude; we need to rethink how we present diagnoses of serious conditions to parents." Science Daily (7/23/12): Children With Trisomy 13 and 18 and Their Families Appear Happy
• Seattle Children's Hospital (7/24/12): Social Networks Serve as Source for Parents  "Mildred Bay initially found some solace and information via social networks.  A pediatrician by trade, Dr. Bay was a resident at Seattle Children’s and now works at Peninsula Children’s Clinic.  Lucy, 3 and one-half months old, has trisomy 18.  Dr. Bay said hearing that diagnosis was a complete shock. ...  “I would look at various blogs and websites, and learn about what other families’ experiences were like.”  Many families have very intense but ultimately very positive experiences with their children despite the diagnosis, she found.  “As a pediatrician, and having worked at Seattle Children’s, I knew kids with complex medical issues.  The road is hard, but not unmanageable if you have the right support.”"  
• Suite 101 – Pregnancy & Childbirth (7/25/12): Raising a Child with a Disability – Parent’s vs Physician’s View 
• US News & World Report (7/23/12): Parents of Severely Disabled Kids Say They Enrich Their Lives – Families dealing with trisomy 13-18 face grim predictions, turn to online support, study found  "When Vanessa Hernandez's sixth child was born, she knew right away her daughter was different.Hernandez's pediatrician wept as she told her the diagnosis. The baby had trisomy 13, a devastating chromosomal abnormality. Most children die before their first birthday and have serious mental and physical disabilities, including heart and breathing problems....according to the study in the August issue of Pediatrics. Many parents -- 87 percent -- were told their child's condition was "incompatible with life," 57 percent were told their child would live a life of suffering, 50 percent were told their child would be a "vegetable" and 23 percent were told their child would "ruin their family." The medical community, including the American Academy of Pediatrics Neonatal Resuscitation Program textbook, recommends against resuscitation for trisomy 13 and 18." 
• Washington Post (7/23/12): Varying views on Trisomies 13 and 18

More on Barb Farlow's Story: 
Barb Farlow is one of the co-authors of this amazing study.  I am extremely privileged to know Barb. She is such a tremendous resource to the trisomy 13 & 18 communities. Her story about her T13 daughter is worth the read! She is an amazing woman and mother, and an incredible advocate for our children.  

• The decision to accept disability: One family's perspective
• Misgivings
• Montreal Gazette (7/25/12) –  Parents of kids battling rare disorder Trisomy 13 fight back 
• Annie's Related Stories

Looks Great!...On The Surface (i.e. What You See is NOT Always What You Get)

The Big Buzz in the Disability Community is the UN Convention on the Rights of Persons with Disabilities. On the surface, this is a GREAT list of societal attributes to aspire to. Who would publicly admit, or even debate, that they don't agree with the general principles of the convention? They describe a level of humanity and dignity that everyone deserves.

(a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;

(b) Non-discrimination;

(c) Full and effective participation and inclusion in society;

(d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;

(e) Equality of opportunity;

(f) Accessibility;

(g) Equality between men and women;

(h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.

I certainly want to see this for all disabled people!  And as the parent to a severely handicapped child, I want the USA to aspire to all of these principles! The problem is, that isn't the issue, or the debate!  The USA is already leaps and bounds above other countries of the world in providing disability rights to its citizens. Our grand-daddy of disability laws is the Americans with Disabilities Act. Then there is the Assistive Technology Act .  Our Individuals with Disabilities Education Act (IDEA) and section 504 of the Rehabilitation Act are essential for the amount of inclusion and resources that families with disabled children have in an educational setting - much more than anywhere else. The Architectural Barriers Act specifies design requirements for new and remodeled buildings. Until you travel internationally with a wheel chair, you just cannot appreciate how access friendly most of our buildings are.  In fact, if you need more evidence that the USA already "gets it", then this US Department of Justice Guide to Disability Rights Laws may help inform you of just how far we've come. 


Are we perfect? Of course not. There is plenty of room for improvement! But listening to my many international friends with disabled children, we have been paving the way for disability rights long before the UN took up the fight.  We do not need the UN to direct us in this path.


So what exactly is the problem?
I was going to list a bunch of issues and directly relate them back to the Convention details, but there are some organizations out there who have already done this.  Here are some links you can check out to get more info on the topic:

• Protecting the Rights of Parents and their Children, by Karen and Rick Santorum 
• Homeschool Concerns:  http://www.hslda.org/docs/news/2012/201205250.asp
• Senate Debates:  http://www.disabilityscoop.com/2012/07/13/disability-rights-senate/16008/
• Finding the Gaps - Comparative Analysis Between US Disability Laws and the UN Convention on Rights of Persons with Disabilities:  http://www.ncd.gov/publications/2008/May122008 (Although this is a pro-convention article, there is a lot of good information here regarding current US disability law.)
• Debatewise - Should the US Congress ratify the UN Convention?:  http://debatewise.org/debates/988-should-the-us-congress-ratify-the-un-convention-on-the-rights-of-persons-with-disabilities (and YES, point 4 on the "no" side is my submission!)

The article, Protecting the Rights of Parents and their Children, by Karen and Rick Santorum, does an excellent job of summarizing many of the issues I personally have with the convention. 


But even beyond their points (that I totally agree with) on disabled children, homeschoolers, and our God-given rights as parents, I have two other issues.

1. I just don't understand why any US citizen would want or feel obligated to bow to a governing body that we did not vote for nor has our country in their best interests. It is not a democracy to allow a foreign body the authority to compel our conformance to regulations written by UN bureaucrats. Paragraphs 10, 23, and 25 of the treaty are so broadly written that they might even be interpreted to affect right-to-life issues. 
2. Who is the UN's Health "arm" that defines policies and standards for worldwide healthcare issues? Not who, but WHO - World Health Organization. :-)  From their website: WHO is the directing and coordinating authority for health within the United Nations system. It is responsible for providing leadership on global health matters, shaping the health research agenda, setting norms and standards, articulating evidence-based policy options, providing technical support to countries and monitoring and assessing health trends.  Not many people will *get* this point because it directly relates to those with children internationally defined as "lethal anomalies".  This subject is near and dear to me, as my daughter's condition is one of the so-called "lethal anomalies". (Good thing she doesn't know this!!) On page 43 of the WHO manual entitled Primary Health Care Approaches for Prevention and Control of Congenital and Genetic Disorders, the "options for best possible care in common congenital disorders" defined for trisomy 18 is... palliative care (surprise! surprise!).  Please note that this is the only option listed for trisomy 18.  And that protects my daughter's disability rights...how?!  And if you do some digging (and WHO does not make it easy to find these documents, most references are accidentally found on other medical or related websites), you will find more disturbing references regarding those with severe cognitive disabilities.  And, as far as I am concerned, ANY (health-related) conventions created by the UN will implicitly follow the policies set forth by WHO as implied by their definition.  

Maybe I just got lucky? After all, my daughter DID go home on just Hospice / Palliative Care at the age of 6 days old, mostly because we were told that trisomy 18 children just don't live. Well, after seeing her fight and her will to stay here despite such severe apnea episodes around the clock that we nick-named her "Blue Belle" as she set off her apnea monitor constantly, we took her off hospice and went back to the hospital at 6 weeks of age. She surely would have died in a few more weeks as the stress of no sleep and inability to breathe slowly deprived her organs of oxygen and weakened her body despite her fierce fighting spirit. And even though the hospital did start all kinds of tests to determine the problem (which was defined as central apnea before any testing had even begun - just because that's what doctors are told - trisomy kids die from central apnea and/or heart conditions), we were still told it would be better not to pursue interventions.  Once a simple full sleep study showed that she had severe OBSTRUCTIVE APNEA, and not central apnea, we were able to gain medical support and quickly move to address her apnea through a trach to stabilize her. She is now a relatively healthy 3 year old (despite her delays) with full trisomy 18.  Her prognosis is unknown because she has defied the lethal anomaly / incompatible with life label.  She is Rebekah, a loved child.  On the surface, she is see as Trisomy 18.


So I leave you with the thought that what you see (on the surface) is not always what you get - neither with the UN Convention on the Rights of Persons with Disabilities, nor with Trisomy 18 and my daughter. 

Hypersensitivity in Trisomy Kids

Many trisomy kids have sensory defensiveness or sensory processing disorder (in layman's terms, hypersensitivity to touch and/or tactile input - including oral stimulation).

When Rebekah was a little over a year old, we worked with an OT that had us perform the "Wilbarger Brushing protocol" on Rebekah. It helped tremendously and we were actually able to get her to eat some orally and not react to physical input with crying. It also helped her become better at managing sensory-overload situations (like really busy, really loud places).  We eventually stopped the program because we were not seeing additional benefits. But last fall, Rebekah decided she didn't want anything in her mouth anymore. We figured it was just due to becoming more active physically. Many special needs kids will advance in one area, and regress in another for awhile. Well, her oral defensiveness has not gone away and we've lost ground on the oral feeding. Plus Rebekah sometimes acts strangely when touched in certain places. So her nurse and I discussed starting her back on the brushing program that we thought was helpful before.

The formal name of the program is called the The Wilbarger Deep Pressure and Proprioceptive Technique (DPPT) and Oral Tactile Technique (OTT) and its for Sensory Defensiveness (hypersensitivity to touch and/or tactile input) and Sensory Processing Disorders (SPD).  It was developed by Dr. Patricia Wilbarger, MEd, OTR, FAOTA, an occupational therapist and clinical psychologist that has been working with sensory processing theories for over 30 years. I've seen statistics that only 20% of kids will not benefit. About 40% will be greatly improved, and the other 40% will see some kind of improvements. Minus the starting week of the program, I think this is pretty good numbers for a relatively easy method, so I recommend it to my hypersensitive friends as a good method to try!

To begin, you need to find a therapist (PT, OT, or SLP) trained in the program because it is not recommended to do it without For the first 1-2 weeks, it requires dedication and is intense with the exercises (which only take a few minutes of time, but have to be done every 90-120 minutes around the clock). Once the first 1-2 weeks is completed and the therapist hat is working with you on the program promotes them beyond this initial phase, it then only needs to be done about 3-4 times per day.

Program Steps:
1. Take a deep pressure therapeutic brush and brushing the arms, legs, back, hands, feet in a quick, deep circular or back and forth movement. (This is basically a cheap plastic bristled surgical brush.)
2. Follow with a regiment of joint compressions.
3. Afterwards, complete the oral part of the protocol which requires oral swiping of the mouth a specific number of times followed by a certain number of jaw compressions.
4. The technique should be followed with daily activities that also stimulate proprioceptive input.

Possible Benefits:

• improved processing and less defensiveness
• calming
• improved attention
• improved transition between activities
• improved tolerance to being touched
• better sleeping
• better therapy tolerance
• better central nervous system - peripheral nervous system communication which results in movement coordination and better communication

Unfortunately, I cannot find detailed instructions online for the method. Guess that's why you have to go to a therapist trained in the method! But here are some links giving further information about the program and supplemental activities you can do to help improve sensory defensiveness.


Resources:

• http://www.sensory-processing-disorder.com/The_SPD_Companion-Wilbarger-Protocol.html
• http://www.ot-innovations.com/content/view/55/46/ 
• http://www.developmental-delay.com/page.cfm/208

It is important to remember that this is just ONE possible "treatment" for sensory issues and defensiveness. It will not work on every child. But we did have success, and are looking forward to seeing some more success when we start again. For an 80% success rate, I say, why not try it?!

Tribute to Caleb (3/20/09 - 8/29/11)

As little as 2-3 years ago, there were very few resources online to help families faced with the diagnosis of trisomy 18/13. There were even fewer active resources that helped CONNECT families of  LIVING children. While I was pregnant with a prenatal diagnosis of trisomy 18, I needed that hope and I needed to talk to 'experienced' trisomy families so I could educate and prepare myself.  It was so hard to find living kids. So I started a group called Trisomy 18 Mommies* on facebook to connect all of us, no matter where we were in the trisomy journey, and suddenly I started finding trisomy families, many with living kids that provided me with so much hope! Online, the trisomy families share fears, milestones, illnesses, frustrations, tears, joys, friendship, knowledge, and grief. We share things our friends and families just don't understand, because they are not on the same Journey.

I have a very special bond with one family in particular - the Adamyks. Jeannette and I found each other on facebook as we were both beginning this trisomy journey. Jeannette and I quickly started sharing more than just the trisomy journey, we started sharing life together.  The Adamyk's son, Caleb, was born a month before Rebekah and also with full trisomy 18. Jeannette and I may have developed a strong bond, but I always felt like Rebekah and Caleb were kindred spirits too. Caleb is the 'groom' in Rebekah's 'wedding' pictures, and they look a lot alike and share many mannerisms.  

Caleb went to be with Jesus on 8/29/11.  I have to be honest, I have had a very rough time this past month.  I haven't been interested in my normal activities, it is a struggle to get through the days, and I have been having bad dreams and anxiety.  I have wanted so much to blog about Caleb's funeral and my feelings through this grieving process, yet I still cannot put it into comprensible words.   I know my pain isn't anywhere near that of Jeannette and her family.  Yet my pain is enough that it has been debilitating.  Oh how I hate that one of my best friends has to go through this part of the 'journey'... and I hate that any of us have to even think about facing it one day.  But through our friendship, and by sharing this journey with Jeannette, I have seen the depth of her love, the depth of her commitment, the extent to which she would go to help her son, and how to gracefully and lovingly one can face the worse nightmare of any mother - the death of your child.  The pain and suffering doesn't negate the joy and blessing of having a miracle child that defies the odds.  It doesn't make us regret choosing life.

Caleb's legacy and what he means to the trisomy community:

• Caleb had the most beautiful smile that melts everyone's heart. He showed that having a special child could be full of happy moments.
• He gave us hope to not give up on our children, but to fight for them.
• Caleb became an encouragement to other families faced with the same diagnosis, and the Adamyks showed us how to be advocates for our children.
• Caleb proved that life is more than what you accomplish by worldly standards. Trisomy 18 children are worth fighting for. Life isn't about striving for perfection or success, but about loving and living, and enjoying each day.
• Caleb helped bring people closer to God and gave us a glimpse of what unconditional love means - suffering without complaint while loving those around us, just as Jesus did.

Before Caleb went to the hospital in what would be his last days, Steven Adamyk twirled him around outside in the rain, just enjoying a special moment with his special son. This beautiful moment reminds us that "Life isn't about waiting for the storm to pass, it's about dancing in the rain."

Jer 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Although it is hard for me to see and accept this now, I know in my heart its true and I am praying daily for the Adamyks and for all my trisomy friends that have lost their child.

Caleb lived in Ocala, FL. Ocala Star Banner has been following Caleb's story since birth. Here are the links to some of the beautiful pieces done on him:

• 3/19/11: Caleb turning 2 amid support for Edwards syndrome kids
• 8/30/11: After celebrating his 29th month of life, Caleb dies at area hospital
• 9/7/11: Boy's spirit, love honored during celebration of life
• 10/3/11: Caleb Adamyk's Story
• Ocala.com photo gallery from all of Caleb's articles
• A complete list of his articles can be found here

Michael Robinson (a family friend of the Adamyk's) made this video: Celebrate Everything - A Tribute to Caleb.

Caleb's Celebration of Life Service:



Caleb Adamyk's Story:

Come To Jesus by Chris Rice

Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!

Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!

And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!

O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!

Rest in Peace, Sweet Caleb. We love and miss you so much!!

*Trisomy 18 Mommies is one of many online resources available to families wherever they are in the trisomy journey. We currently have about 540 members at all different points in 'the journey'. Contrary to the name, the group is also for dads, family members, etc and encompasses families facing trisomy 18, 13 or any similar genetic disorder considered 'incompatible with life'. However, Facebook will not let us change the group name to better reflect the composition of the group. :-)  If you are facing a diagnosis of trisomy, already have a trisomy child, or have lost a trisomy child, we offer a community of compassionate members that 'get it'. Feel free to join us.

The VALUE of One Extra Chromosome

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!


This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all!  It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!)  Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance.  Bearing them is considered a misfortune, and supporting their life is a burden to society.


The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...   


But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders!  Our length of time on earth also does not determine our value.  Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.


The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life!  And the bottom line is, they are also created in the image of God.  If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life, 

and to love those that He loves.

Web-Based Doctor Referral System for Trisomy Kids

Trisomy 18 and 13 are deemed 'incompatible with life' by the medical community. The statistics are staggering, with only 10% of pregnancies resulting in live births, and the majority of those dying by the median age of 2 weeks. Looks pretty bleak, huh?

But let's consider some FACTS the the statistics hide...

• Many, if not most, of KNOWN trisomy 13/18 (and even 21 - Down's Syndrome) pregnancies are terminated because parents are told how terribly hard it will be to manage a child that is severely affected mentally and physically. These babies are never given a chance - they skew the statistics and make it look like lives that are not 'viable'.
• Most trisomy 13/18 babies, when born, are put on hospice and sent home so that families can enjoy what little time they have with them. Some of this is because of the medical community's push to not extend the 'life' of these incompatible and undesirable children. Some is because parents trust and believe in the doctors and medical community to give us truthful information. Our own Rebekah was put on hospice out of the hospital, not because we didn't want to give her a chance, but because we believed the perpetuated lie that these children are 'incompatible'. It didn't take us long to figure out she was a fighter, and well worth fighting for!
• And the rest of them? Yes, there is a percent that will not make it because of the combination of conditions they have, but many WOULD make it if the medical community would see value in their lives and afford them the same life-saving interventions that 'normal' children with anomalies are given without second thought. Many of my trisomy friend families have actually been denied life-saving operations for their children, even children that have proven they are compatible with life and have lived with their conditions past one year of age.

Out of all the trisomy 13/18 resources out there, there is no good system for helping parents find the medical resources (doctors and hospitals) willing to work with them to help these children. There is an exciting project out there designed to do just that! But it needs YOUR help to get the grant money necessary to fund its inception.

Even if you do not have a trisomy child, PLEASE vote everyday in August for this project. You can vote online once per day, and text once per day. Please help Rebekah and her friends by supporting efforts to bring REAL help to the living kids of trisomy 13/18! Let's work together to show the world that these children should not be labeled statistically as 'incompatible with life'.

They deserve a chance...
and YOUR vote!

Trisomy 13 and Trisomy 18, and related numbered Trisomy Variations.... Families, Friends, Missions of HOPE coming together to VOTE---Have you voted today? If you don't see this link on your Trisomy Support, resources, Please post and share. Bombard them.. We need to win this challenge. DAILY VOTING, by FACEBOOK VOTING and TEXT (Text 101529 to Pepsi at 73774). And if your posts get deleted, then you know this resource you frequent is NOT coming together with the TEAM of Trisomy Sites working together. Then you need to QUESTION WHY? Why would a support organization not want to help all of TRISOMY Families in this way... So keep your eyes open and be aware of those sites that are all SIGNIFICANT in coming together for the common good. Thanks for your support, it is via the SMALL and many creative sites that we have made the most SIGNIFICANT CHANGE in how OUR PRECIOUS CHILDREN ARE SEEN and TREATED! God Bless you ALL in your efforts for our KIDS.