Ceces Brain Surgeries and Med Bills. P.H.S Epileps

Hello, our names are Justen and Krysta. We are the parents of seven beautiful kids including our strong little Cecelia Rain.

Cecelia was born with an extremely rare genetic disorder called Pallister Hall Syndrome. She is one of 100 reported cases, so as you can imagine, there is not a lot of resources out there to help her.

In her 16 months of life, She has had a total of three surgeries, several medical procedures, and has spent a majority of her life in the hospital.

A part of Cecelias condition includes a hematoma deep in her brain causing her to have approximately two to four seizures an hour. It also affects many other parts of her body. She does not know what a seizure free day or night feels like.

   We were informed by many doctors that Cecelias needs a Lazer ablation surgery to go in and safely remove the hematoma as soon as possible. Unfortunately her insurance will not cover the bill, and she has been suffering while doctors and I try everything we can to get her surgery approved.

   She is on the maximum amount of several medications that she can have, has went through a severe allergic reaction to some of the medications we had tried called DRESS syndrome, and even on a very strict ketogenic diet. 

  Unfortunately while hoping for surgery approval things have progressed, and along with her typical seizures she now has infantile spasms. On September 28th, Cecelia was rushed back to the hospital because that morning she didnt want to wake up. Cecelia has been in the hospital since, and is on a feeding tube, getting fluids through her i.v., and on constant rescue medications. As of now, her seizures are stronger than ever and her time is running out.

  We were told the only other option would be an open brain surgery. Her team of doctors really don't think it is safe to do open brain surgery. If by some miracle she did survive it, she would most likely become blind, have several physical and mental disabilities, and not be able to live like other people. She would be completely helpless.

  her care team is worried that at this point her survival rate might be better with the open brain surgery. We can't get the lazor ablation surgery approved through her insurance, and she doesnt have time to wait. The open brain surgery option is still very dangerous, and they really need to do the Lazer ablation option instead. 

If she could have the the Lasor ablation surgery, she could live a full seizure free life. She could walk, play, talk, and grow like every child deserves. I am asking for help for our baby girl. It isn't fair for her to have to keep going through this, and she deserves to be happy. We are reaching out to everyone in hopes we can cover the cost of her Lazer surgery. Please help our baby girl so Cecelias story doesn't have to be cut too short.. thank you!