Blake & Lance's Craniosynostosis Journey

$7,435raised of $100,000 goal
7%

Beneficiary: Blake & Lance Organizer: Family & Friends

This fundraiser is closed
On April 30, 2013, the state of Kansas was made a little brighter with the birth of identical twin boys Blake and Lance Tranckino. The boys love playing toy cars with their Daddy Vic, finding their Mommy Karla during peek-a-boo, and being read to by their big sister Kylie.
 

As they grew, Karla and Vic couldn't help but notice that the twins head's appeared misshapen, so they inquired further with their pediatrician.  After undergoing CT scans, both boys were diagnosed with sagittal craniosynostosis at 2 months of age. Craniosynostosis is a congenital birth defect that causes one or more skull sutures to close earlier than normal. If left untreated, craniosynostosis can cause increased intracranial pressure, seizures, visual abnormalities, & developmental delays. The only way to correct this is through reconstructive surgery of the skull.  The specific type of surgery that the boys will need performed is called a posterior cranial vault reconstruction and a split skull cranioplasty.  This is a procedure that needs to be performed by an experienced craniofacial surgeon as well as a neurosurgeon. 


Blake and Lance's insurance coverage is the Sunflower State Health Plan through KanCare.  When Karla contacted the insurance company, she was informed that they did not have any in-network craniofacial surgeons to perform the posterior cranial vault reconstruction. So after extensive research and guidance from their pediatrician, Karla and Vic consulted with Dr. Jeffery Fearon at The Craniofacial Center located in Dallas, Texas. Dr. Fearon is one of the few craniofacial surgeons in the world whose entire practice is dedicated to craniofacial surgery, and who performs this delicate reconstructive procedure with an experienced neurosurgeon. Dr. Fearon has spent the last 29 years perfecting his craft, and has pioneered many of the techniques of craniofacial surgery. 


As of January 13, 2014, the insurance company has COMPLETELY denied coverage for ALL surgical and hospital costs because Dr. Fearon is not considered to be an in-network provider. This is despite the fact that Sunflower State Health Plan admittedly does not provide an in-network craniofacial surgeon that would be able to perform a posterior cranial vault reconstruction.  Dr. Fearon has offered to work with the insurance provider to create an in-network agreement to cover medical costs, and Sunflower has also denied his requests.


Because of this, Vic and Karla's out of pocket costs for Blake & Lance’s surgeries will total over $100,000. Since the insurance company completely denied coverage, this amount would be due in full prior to the surgery in order to pay Dr. Fearon, the neurosurgeon, the anesthesiologist, as well as the hospital. Karla and Vic are currently going through the lengthy appeal process with Sunflower to request that they provide an in-network agreement with Dr. Fearon. Their appeal will be submitted no later than January 17th, with hopes of an agreement to follow soon after.  Dr. Fearon would like to perform the surgery at the end of February when the boys are 10 months of age.  At almost 9 months old, Blake and Lance are close to the outer limits of the optimal age to undergo this surgery, and any further delay could jeopardize their chance of a good outcome


We all appreciate as many thoughts and prayers as possible for Blake and Lance's upcoming surgery. We will keep you updated on the appeal process that is being submitted to The Sunflower State Health Plan. If you would like to offer additional support to help the twins with their expensive surgery costs, you can do so through this site. Thank you again for your generosity, love, and concern for Blake & Lance’s journeys through their surgery and recovery for craniosynostosis.



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