Our beautiful daughter Layla, who is 8 years old, is facing multiple major surgeries. Layla has a very large ganglioneuroma tumor in her chest. The tumor is benign, but her doctors have told us Layla would be in a better position if the tumor was malignant. If it were malignant her oncologist could treat her tumor(with chemo/radiation). Surgical removal of her tumor is very, very invasive and risky. Layla has now developed major scoliosis in her back.Layla has gone from no scoliosis curving in her spine at age 4 to a 106 degree curvature at age 8. Over the past 4 years since the discovery of her tumor we have watched Layla's health rapidly decline. And now due to the aggressive nature of her scoliosis Layla has developed "Thoracic Insufficency Syndrome". Her chest cavity is basically collapsing and crushing her lungs. It is very hard for Layla to breathe. Layla is not able to run and play and just be a kid.
Just a few months ago, by the grace of god, I was able to find a surgeon that can help our daughter. The surgeon, Dr. Robert Campbell Jr, is in Philadelphia and works at CHOP, which stands for Children's Hospital of Philadelphia. Layla, her brother Kane, her father Jon, and I live in Orlando, FL. I was not sure how I was going make this happen but I was determind.
We just recently returned from our first visit with Dr. Campbell back in March. Layla's father and I were sure Dr. Campbell, with his many years and expertise in scoliosis and thoracic insufficiency syndrome would have had or know of a case similar to Layla's. But he had not. But he did reassure us that he could still help Layla. Dr. Campbell will be able to surgically attach a VEPTR, which stands for-Vertical Expandable Titanium Rib. This device will help to correct the damage to Layla's chest wall from the tumor and scoliosis.
Dr. Campbell did inform us we would have to come back to CHOP for testing, imaging and to meet with general surgeons Pulmonolgy, Orthopedic, and nutritionist to get a complete surgical plan for Layla. After that she will have the surgery to attach the VEPTR device. After the device is surgically attached, Layla will have to return every 6-8 months so the surgeons can expand her device, this allows her to continue to grow with the expansion.
Layla's father and I appreciate you taking the time to read Layla's story. Our daughter is a beautiful little girl who has a tough road ahead of her. We are asking anyone who is able and wants to help support Layla to please make a donation. Our family understands not everyone is able to donate, but please share Layla's story for us and please keep Layla in you prayers.
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