Hope for Isla Sindelar-Funding Life Saving Surgery
Precious Isla is 4 years old and 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 ribs, respiratory insufficiency, and/or other abnormalities.
For Isla girl the majority of Isla’s vertebrae from cervical spine through thoracic spine are fused, missing, or malformed. Her ribs are also fused together where they 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.
Isla faces surgery every 6 months in her fight. Every 6 months, this family takes their precious fighter and flies across the country to receive expert life giving and life saving medical treatment. There is no option to stop. There is no other course of action to consider. This is Isla’s hope for life. Simply put, without surgery, Isla’s lungs will no longer be able to supporther body. Let’s get real then. OUTSIDE of medical expenses, the approximate travel costs to get the medical care needed, are near $6-7,000 per trip (They have already made seven trips for Isla’s medical care since March 2018).
Isla’s parents, Molly and Justin have and will do whatever it takes to add days to Isla’s life. They are so very grateful for any gift of help to support Isla’s care. THANK YOU from the bottom of their hearts!
From Molly, here is more history on sweet Isla:
”In November of 2017 our family was beyond blessed when Isla joined our family through adoption. 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. God has done miracles…
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 and September 11,2018, Isla had her first VEPTR placement surgeries. 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 VEPTR on her ribs, on both sides. These surgeries/devices are being used to open up her fused ribs to allow her more room to breathe. 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 continues to be 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 surgeon/medical team wants to do all they 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 has had 4 more surgeries, these last 2 years,that have expanded her VEPTR rods and her next surgery in early 2021 will be a more invasive and difficult surgery to replace her VEPTR rods. Her VEPTRs will be replaced one surgery at a time. Isla faces surgery approximately every 6 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! 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!”
Isla’s Blog:
www.graceledinlife.com