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Vanessa Hernandez is mom to 18-month-old Isabel (mosaic Trisomy 13), and executive director of Living With Trisomy 13. This American non-profit organisation is an outreach for trisomy and other rare diagnoses. She approached us to help spread the word of this very rare condition.
The voice of a rare child
Reading this title you may think that all children have the same voice, but that is not the case. The voice of a rare child must be stronger and louder than the voice of most. It must constantly prove that its life is worth living and that they deserve to be treated fairly as a person, not as a genetic analysis.
Speaking seems like an easy task, but the rare child must have a voice without being verbal. Living with Trisomy 13 is an outreach for trisomy and other rare diagnoses and WE are the voice of a rare child.
Children with trisomy have an extra chromosome in their DNA. Normally, humans have 46 chromosomes (2 sets of 23). Children with trisomy have 47 chromosomes. The three most common trisomies are Trisomy 21 (Down's Syndrome), Trisomy 18 (Edwards Syndrome), and Trisomy 13 (Patau Syndrome).
Depending on the severity and form of trisomy (i.e. partial: only part of a third chromosome is present; mosaic: a full extra chromosome is present in only some cells; and full: all cells are affected) the complications can range anywhere from normal intelligence to severe mental impairment.
The scope of physical disabilities is also very wide. While some of these children do not survive past infancy, many continue to thrive and live fulfilling lives, with the help of medical interventions and parental advocacy.
Many of the children that are afflicted by the more severe anomalies sadly have to fight for care and treatment that would be quickly offered to children without a chromosomal abnormality. Parents are finding themselves in situations where they must advocate for their children while educating the medical community on the quality of life these children have. The parents of these rare children must be their voice. They must be strong and fight for their child’s life.
The label that is attached to most of these anomalies is “incompatible with life”. However, the reality of the situation is that no one knows the true potential of these children. Sometimes these unborn children need the medical community to be their voice; they need them to give parents accurate and hopeful information.
Parents have the right to choose to carry on a pregnancy and deserve the same level of care that normal pregnancies would receive. At the same time it is our job as a community to instill a support system to guide these families on the road ahead. Instead of labeling a human being we should be fighting to protect them.
Whether these children grow to become doctors, lawyers, or simply the love of their parents’ lives, they are still the children of our future. In a world where so many people are focused on perfection and normalcy, these children are a reminder of the important things in life. Days full of hugs and laughter are what every person needs. Respect and equality are what every person deserves.
The voice of an unborn child is the voice of generations to come and we should open our hearts and our minds to them. While they may not be able to verbalise their will to live, their strength and courage say it all as they live each day.
Living with Trisomy 13 is dedicated to supporting these families and allowing these children to tell their own stories. Through albums and stories we give these children a voice to speak. Our many support services and resources help families during all stages of this experience.
The voice of a treasured memory child is just as strong as the voice of a child fighting for equality. Sometimes their voice is even louder reminding us to enjoy each moment for there is no guarantee of tomorrow. If you visit our website www.livingwithtri13.org you'll see the faces attached to these voices.
Every person we bring awareness to brings us a step closer to our goal of educating people on the reality of a rare disorder. I myself am the mother of an 18-month-old little girl with Trisomy 13 and I am HER voice.
Contact Vanessa on Vanessa@livingwithtri13.org or through www.livingwithtri13.org.
South African blogs and support groups:
- Lior, my Light (Trisomy 18): www.lior-mylight.blogspot.com
- Trisomy 18 (In loving memory of Madeleine Eva Malherbe, SA): www.trisomy18.org.za
- Down Syndrome South Africa (Trisomy 21): www.downsyndrome.org.za
- Inclusion South Africa: www.safmh.org
- Down Syndrome Health Issues: http://ds-health.com/
More international links:
- Trisomy Advocacy Group (US): www.trisomyhelp.org
- SOFT (US): Support Organization for Trisomy 18, 13 and Related Disorders: www.trisomy.org
- SOFT (UK): www.soft.org.uk
- Trisomy 18 Foundation: www.trisomy18support.org
- Prenatal Partners for Life (US): www.prenatalpartnersforlife.org/Stories/Trisomy13StoriesIndex.htm
- Unique: www.rarechromo.org
