24/52 Nora Rose’s Journey

This painting was done in honor of a little girl named Nora Rose. This precious little baby has brightened the lives of so many people. So much so, that it touched Matika and Shanda enough to want to nominate Nora and her parents to be a part of 52 Things of Beauty. They wanted to share with all of you this sweet baby’s story, GIVE hope to someone else that may have a Trisomy 13 diagnosis and cheer on Nora Rose! Here is what they wrote in their nomination:

 

“Matika and I have been following updates from a precious baby girl named Nora Rose on Facebook, as Matika knows Nora’s dad from high school. We instantly knew we wanted to share her amazing story in an effort to raise awareness and educate others about Trisomy 13, which is Nora’s genetic diagnosis. Working in pediatrics, I know Trisomy 13 babies are not usually given a long life expectancy, but Nora Rose has defied most odds and continues to grow and prosper each and every day. She has such a beautiful story and has certainly touched our hearts, as I know she will capture yours too.

Nora’s mom has written a short summary of Nora’s journey thus far.

Nora Rose is a very unique girl. She has a full case of a genetic syndrome called Trisomy 13, which means the 13th chromosomes in her entire body have three copies instead of two. The prognosis for Trisomy 13 babies are very grim, but Nora has surpassed the odds by the grace of our Heavenly Father. 

19029292_301237670333633_5639812567771092067_nNora’s medical conditions include a complete cleft lip and palate, blindness-she can only see light due to an underdeveloped right eye and an absent left eye, polydactyly- meaning she has twelve tiny fingers, a feeding tube, some sleep apnea- so she sleeps with oxygen to keep it in normal ranges when she has small apnea episodes, and in February she survived open heart surgery- as they repaired a large VSD and a small ASD in her heart. Upcoming surgeries include putting tubes in her ears and removing her 6th digits on both hands. Future surgeries include a cleft lip repair and potentially a cleft palate repair. 

Currently, Nora is doing awesome! She’s generally a happy baby, can roll over, smiles to familiar voices and silly games like pat a cake and dancing, can hold objects with her hands and bring them to her mouth, can sit up for short periods of time with support, and has been cleared by her cardiologist with a PERFECT heart!! God gets all the glory for this miracle girl!!

  Nora Rose’s Journey was created to ask for prayer requests, provide updates to family and friends, and show the world what a true miracle looks like. Now, she is providing hope for other families that have received the heart wrenching diagnosis of Trisomy 13. Instead of aborting, as we were given the option multiple times, she is proving that T13 babies/children can live a happy/somewhat normal life if they receive appropriate medical intervention. Most importantly, we want God to touch others through Nora’s life like He has used her to touch ours. 

If you want to follow along, pray and encourage baby Nora Rose and her family you can see updates on their Facebook page Nora Rose’s Journey

–Matika Thomas and Shanda Shrader

 

If you have someone you would like to nominate please fill out the nomination section of the website. Thank you to everyone participating in the 52 Things of Beauty Project! This outlet of painting for special people and organizations has been such a rewarding way to allow me to do what a love and give stories to my paintings.

Thank you,

Lauren

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