Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Saturday, March 18, 2017

T18 Awareness Day 2017

It's Trisomy 18 Awareness Day! March is Trisomy Awareness Month and 3/18 - for 3 copies of chromosome 18 - is  for Trisomy 18 Awareness. In addition to the posts  "18 Things You Should Know about Trisomy 18" and "Why Trisomy Awareness Matters" from the last two T18 Awareness Days, this year I wanted to add ways to support families you may know or meet who are living with trisomy 18. 

3 Ways to Support Families Living with Trisomy 18:

1. Reach out. Check in. Call. Text. Visit (except during cold and flu season 😷). Caring for a loved one with a medically fragile condition such as trisomy 18 can be stressful and isolating.  Encouraging words and gestures are very appreciated.

2. Donate to organizations that support the trisomy 18 community such as SOFT (www.trisomy.org). SOFT is a tremendous resource for information about trisomy 18 and what to expect when caring for a child with trisomy 18. SOFT hosts an annual conference for families affected by trisomy which is the largest rare trisomy gathering worldwide. My family attended the conference in 2014, and we were fortunate to meet with families from this supportive community in person after having met online. We look forward to attending again in the future.

3. Support funding for Medicaid and oppose legislation that cuts Medicaid. Medicaid provides primary or secondary healthcare for people with disabilities, including trisomy 18. Cuts to Medicaid hurt many individuals and families, especially those with disabilities and medically fragile conditions.

Thank you for learning more about and supporting the T18 community!