Today is World Rare Disease Day 💜
World Rare Disease Day is an annual observance
to raise awareness for 300 million people affected by rare diseases and disorders globally.
Sharing a bit about Isla's story to raise awareness 💙
.....
Our sweet, spunky, and strong Isla faces a
rare condition. 💙
Isla has been diagnosed with Jarcho Levin
Syndrome - Spondylothoracic Dysostosis and Thoracic insufficiency Syndrome. These are somewhat umbrella terms. Each child that has Thoracic Insufficiency Syndrome is a very unique case. Her specific condition is very severe and complex.
.....
Isla was born with missing, fused, and
deformed spinal vertebrae and ribs. She has severe hyper lordosis. Her condition affects her
cervical through thoracic spinal vertebrae and her ribs.
Since birth, her lungs are half the size they should be. Without medical intervention, her ribcage would not grow any bigger. Thus, her lungs would not be able to sustain life for her.
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| Baby Isla ❤ just 2 months in our arms |
We were told by an Orthopedic doctor at a Children's Hospital, two years ago, that "Isla's condition is so rare and complex that no
doctor would touch her...if they did, it would be heroic and not worth the hard medical journey. She will maybe live to
age 3." We were heartbroken but would not stop fighting for Isla. 🙏🏻💗
We refused to believe that no one would try to help.
.....
We feel so thankful that God led us to a team
that said yes. Isla was able to have a diagnosis for some of her needs and a
medical team at CHOP saying "yes" to fighting for her life. We are so
very thankful for Dr. Campbell. He is the creator of the VEPTR rods. His words were: "to
do nothing is not an option." Those words were a miracle to hear.💙 He said yes to fighting for Isla. We are grateful for Dr. Anari continuing on in Isla's care in the same way.
Moving forward, we do not know what the future holds. But, we will always
fight for Isla. 💗💪🏻🙏🏻
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| Isla with Dr. Anari! |
We are so grateful for every day with our sweet girl!
God has given Isla a personality filled with
determination, joy, fight, and adventure...she is a miracle. Isla is 3 and
thriving.
In the past 2 years, Isla has had 2 VEPTR
placement surgeries and 3 VEPTR expansions so far...
.....
We praise God that we get to be Isla's family.
God has used her to change our hearts in such a big way.
💙 WE LOVE YOU, ISLA! 💙
So thankful for the blessing of meeting and
learning more about some amazing warriors facing rare diseases these past 2 years...they and their families are incredible and have touched our hearts. These rare warriors are our heroes!
Here in the U.S. we raise awareness by "showing our stripes" like a zebra! Stripes are to zebras what fingerprints are to humans. The striping pattern is unique to each zebra!
So, we wore our stripes today!
So, we wore our stripes today!
Isla girl, you have changed us in an incredible way! God has shown us great and incredible things through your life! MIRACLES! He has given us a greater perspective in so many ways!
We are so proud of you and LOVE you so very much!
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