lisaannettestanley
- Feb 29, 2020

International Rare Disease Day

February 29, 2020 is Leap Day. In a Leap Year. Leap Day is the Rarest Day of all as we only have Leap Day once every 4 years to correct the mathematical timing in the Calendar.

It is also International Rare Disease Day.

Life is hard enough when we are born with 10 fingers & 10 toes. Not all of us are that lucky.

As a Health Insurance Agent of more than 13 years now, I have never been more profoundly affected by HealthCARE issues of CRITICAL IMPORTANCE than the day my sweet little 4-year-old Grandson was born with a Critical Illness.

While he does have 10 fingers & 10 toes, he does have a Life-threatening Critical Illness that will be with him as long as he lives.

He has a PreExisting Condition FOR LIFE.

THIS is what drives me.

THIS is why I am more Politically Motivated than ever.

THIS is why I do what I do.

In 2019, the Intestinal Malrotation Foundation put out a call for families affected to raise awareness & thereby encourage Research for Treatments & a possible cure by requesting official recognition from our individual State Governors with a State Proclamation of January 15, 2020 to be recognized as Intestinal Malrotation and Volvulus Awareness Day.

To my great surprise, Texas Governor Gregg Abbott DID honor my request, in what I consider to be a Major Coup.

Some people reading this may be aware that the State of Texas, Governor Gregg Abbott & Texas Attorney General Ken Paxton are currently leading the way with a Federal Lawsuit in the Supreme Court.

I could not be more FURIOUS.

THIS is how you have a positive expression of anger.

THIS has angered me into action.

The two main provisions of ObamaCARE that are under attack are protections for PEOPLE with PreExisting Conditions & the Individual Mandate that people buy Health Insurance to be declared UnConstitutional.

I IMPLORE Governor Abbott to drop your DISGRACEFUL ATTACK on ObamaCARE.

Below is what I wrote to Thank him for his Official Gubernatorial Proclamation for recognition of Intestinal Malrotation and Volvulus Awareness Day.

He HIMSELF has a PreExisting Condition.

Please do the right thing Governor Abbott.

Intestinal Malrotation and Volvulus Awareness Day

Bi-Partisan cooperation between Democrats & Republicans make this country work for all of us.

When someone from the other Political Party wins an Election, that does not absolve them from governing & representing all Citizens in their jurisdiction.

Today I would like to thank Texas Governor Greg Abbott for honoring my request to join the Intestinal Malrotation Foundation & others across the country with loved ones facing life with a Rare Disease.

As a Life & Health Insurance Agent for more than 13 years now, providing Life-Saving Care is Personal & Professional for me.

My 4-year-old Grandson is a Volulus Survivor & will need PRESCRIPTION FOOD for the rest of his life unless we have some Medical Miracle Cure through scientific research.

I would like to thank Erin at the Intestinal Malrotation Foundation for putting out the National Call for families with loved ones to make this request for Ceremonial Recognition in their home states for this official designation.

Here is a link & some information from her page on signs & symptoms to look for in Newborns, in particular. Malrotation & Volulus can occur at any age but is most prevalent in newborns.

https://www.facebook.com/intestinalmalrotation/

It’s Intestinal Malrotation and Volvulus Awareness Day!

Our main awareness event will begin at 3 pm today at Cleveland Clinic (9500 Euclid Ave. In the Lerner building). It is open to all ages and you do not need to have signed up to attend. We hope to see you there!

If you are unable to make it to Cleveland today there are many ways you can spread awareness in your own community:

1) Update your Facebook profile picture with our awareness frame and consider adding some of the signs/symptoms of malrotation and volvulus to the post such as “Intestinal malrotation is a congenital birth defect that allows the entire intestine to twist on its axis; this is called a volvulus and can cut off blood flow with devastating consequences.

Prompt surgical intervention is a life-or-death matter. The hallmark sign of volvulus is GREEN or BRIGHT YELLOW vomit; this is bile, reported in roughly 80% of pediatric cases. Remember this: When it comes to vomit, BRIGHT YELLOW and GREEN must be seen”: https://www.facebook.com/profilepicframes/?selected_overlay_id=140510540173729

2) Share our infographic with anyone you can (bonus points if you can get it posted in a local hospital or doctor’s office): https://www.facebook.com/…/a.104077455273…/1428985210582750/

3) If you haven’t already, register your child with malrotation for their free rare bear: https://www.rarescience.org/imf/

4) Celebrate the day at home! Share your story with friends, your child’s school, or anyone else that you would like! Sharing your story with others will increase awareness in your local community. Send us a photo to let us know how you celebrated.

On a side note, I would like to implore Governor Abbott to please reconsider & withdraw the State of Texas lawsuit to declare ObamaCARE as Unconstitutional.

ObamaCARE, MediCARE, Medicaid & CHIP save lives.