Isla's Medical Journey #islastrong

Sweet Isla just celebrated turning 2 – she has been through so much in her little life.
We were so blessed that she joined our family 9 months ago, through adoption.
She is a brave and joyful little love – so full of L I F E.

In January 2018, we found out what Isla was facing.
Right after coming home through adoption, Isla had to go through many doctor appointments and tests. We knew she was facing medical needs but were not aware of how severe they were.
We finally had answers for our precious girl. She is fighting for her life with Jarcho Levin Syndrome.
Jarcho-Levin syndrome is a rare genetic disorder characterized by distinctive malformations of bones of the spinal column (vertebrae) and the ribs, respiratory insufficiency, and/or other abnormalities.
The majority of Isla’s vertebrae from cervical spine through thoracic spine are fused, missing, or malformed. Also, her ribs are fused together where they come back and meet the spine. Due to this, she has what is called ‘Thoracic Insufficiency Syndrome.’ Her lungs are half the size they should be for her age.
We brought Isla to the top orthopedic and lung doctors in our city…they gave us no hope for our sweet girl. They told us “nothing can be done, no doctor around the world could help her, and she has about 1-2 years to live”. We were devastated but knew we would not stop fighting for her life.
Within 2 days from that, we found our way to calling the leading orthopedic and pulmonary (lung) teams at Children’s Hospital of Philadelphia. They quickly listened to us, read through Isla’s records, and asked us to come consult with them. They were wonderful and gave us words we longed to hear “to do nothing is not an option” – they wanted to try to help our girl…to fight for her life! We praise the Lord for leading us to them! On May 2nd, 2018, Isla had her first VEPTR placement surgery. The Vertical Expandable Prosthetic Titanium Rib (VEPTR) is 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. Isla was able to be seen by the doctor who created the VEPTR device. He, and his colleagues, did a rare surgery on Isla. They were able to place a rod on her right side ribs. On September 11, 2018, Isla will be having her next VEPTR placement surgery for her left side ribs. These surgeries/devices are being used to open up her fused ribs allow her more room to breath. Our prayer and hope, is that her lungs will take advantage of the new room created by the VEPTRs and grow new lung tissue. She is in a fight, but she is a fighter. She amazes her doctors, therapists, and us with her daily drive for L I F E. She is pure joy. We are so blessed to be her family and witness the miracle she is. There is a big road ahead for Isla in her medical journey. We are not guaranteed anything in the days ahead, but she is a warrior and her doctor wants to do all he can to help her.
Due to the severity of her needs, we need to bring Isla to the best doctors that know how to help her and are willing to try and help her in this fight. We have to travel across the country for her medical care. Isla will be having surgeries every six months. Many people have reached out asking how they can help with the next upcoming medical trips or how to give to help in meeting Isla’s medical needs. We are doing all we can to provide for these needs and praise the Lord for such encouragement of those wanting to help.  Outside of medical expenses, the travel costs to get the medical care needed, are near $6,000 per trip (We have already had five trips so far since March 2018). We are so very grateful for every gift given to help support Isla. Thank you for helping our sweet girl in getting the care she needs. We are forever thankful.

God has been so faithful to lead us to the best care for Isla's needs. He created her with such a determined drive for life and vibrant joyful personality...a Bible verse we chose for Isla's life - Romans 15:13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. WE LOVE YOU, ISLA! 

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Justin Sindelar 
Bothell, WA
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