grace led in life

 Hi everyone! 

As this new year begins, we are working on getting all the details of Isla's next surgery in place. 
She will be having a VEPTR revision surgery on February 26th, 2021. 
To remind everyone...
Isla has Jarcho Levin Syndrome - a rare genetic disorder characterized by distinctive malformations of bones of the spinal column (vertebrae) and ribs, respiratory insufficiency, and/or other abnormalities. Due to this condition, Isla's lungs are half the size they should be (Thoracic Insufficiency Syndrome). She undergoes life-saving VEPTR surgeries every six months. A VEPTR is a Vertical Expandable Prosthetic Titanium Rib (VEPTR) - A curved metal rod designed for many uses: To stabilize the spine and ribs in children with severe chest wall deformities so they can breathe better.
This surgery will be Isla's first revision surgery. This means, her current VEPTR rods have almost reached full expansion capability and she will need her VEPTRs replaced. 
Isla has had two VEPTR placement surgeries and four VEPTR expansion surgeries so far.
A VEPTR revision surgery entails taking out the current VEPTR rod and replacing it with a new, slightly bigger VEPTR that can be expanded. A big challenge with this surgery, specific to Isla's needs, is her fusion. Isla had a LOT of fusion prior to having these surgeries. Her surgeons had to do a specific and rare surgical procedure to cut through all her fusion in order to place the VEPTRs.
Sadly, Isla's body is genetically wired to fuse her ribs. So, in the last couple years of having her VEPTR rods, her rib fusion that was cut in her first two surgeries, has returned. With this revision surgery coming up, she will have to have all that fusion re-cut with a "V-Osteotomy" again, in order to try to place the new VEPTR rods. To place these VEPTRs, it will be done in two separate surgeries; one side at a time. It is too much on the body to do both at once. 
Here is a current view of Isla's bone structure...our brave warrior. 

In looking ahead, we wanted to do something that was a visual reminder for Isla of the support she has from so many of you! It is easy for us to see messages of encouragement and we share that with Isla, but at her age, it will be so beneficial for her to SEE a visual of support as she continues to face surgery every six months, procedures, tests, therapies, and more. 

People cheering her on with HOPE will be such a joy for her!
We just launched a tshirt/sweatshirt campaign through the website Bonfire!
With each sale of a shirt, a portion of the sale will go toward Isla's medical expenses, but we feel even more importantly, these shirts really will be a support to our little warrior as she bravely walks this journey. 
We designed these shirts with a graphic that is an abstract view of Isla's ribs, VEPTRs, and spine.

Would you consider joining us in helping Isla feel HOPE through her journey? 
HOPE FOR ISLA - SHIRTS! (CLICK HERE)

We have a t-shirt and sweatshirt option for adults and a t-shirt and sweatshirt option for kids! 
There are multiple color options - Isla's favs are purple, pink, and blue! 

This shirt campaign will run for 14 days! 

We are asking that you share this and spread the word! Please share the campaign! 
https://www.bonfire.com/supporting-islas-hope/
Thank you SO MUCH for all the love and support for Isla and our family! Thank you for praying for us and encouraging us! We are so very grateful!