Thalia was recently diagnosed with Slit Ventricle Syndrome and Chiari Malformation. She will need a Cranial Expansion Surgery to expand her skull. At this point her skull is not growing and her brain no longer has any room to grow. This has made her undergo a very painful and life threatening existence over the last 7 months. Thalia has tackled it all, being born with a chromosomal immune deficiency disorder known as Deletion 22qll. She also has Truncus Arteriosus (congenital heart disease), hydrocephalus and a VP Shunt. With her complicated medical issues she has had multiple spontaneous brain bleeds which makes this surgical procedure very dangerous. Thalia's brain has already suffered an extreme amount of damage from previous bleeds, a stroke and other complications.
So it is important for her to have this surgery before anymore damage is done. Then she will have an extensive recovery and will need constant 24 hour care for several months.
Even though the surgery is scheduled for January 8th, we need help now. Please help us help Thalia. Throughout Thalia’s life she has been hospitalized 41 times. Our focus over the years, of course has been keeping Thalia as healthy as possible and keeping her alive. With two young boys at home and trying to make ends meet, while my husband and I are taking turns in the hospital to care for Thalia, it has drained all of our family resources. Your generous donations will help us to continue to support and focus on our beautiful Miss Thalia and her fight to survive.
Once she is able to go home from the surgery she will have an external distraction device that will need to be kept stable and then adjusted each day for at least three months to ensure the skull growth. She will have to be watched constantly, even through the night to make sure she does not touch the device as it can cause a bleed or brain damage. Then when the surgeon is comfortable with the size of her skull, she will need another surgery to take out the expansion equipment.
Thalia has already battled through 3 open heart surgeries, 7 brain surgeries, a stroke, a coma, 3 brain bleeds, Diabetes Incipidus, Colitis/Enteritis, and multiple other surgeries.
Against the odds she has fought courageously through it all, like the strong trooper she is. Every day she amazes all who are around her with her will to live. There is no one who gets to know Thalia that does not fall in love with her, whether doctors, nurses, family, friends and even strangers. She has a happiness and joy of life that is infectious.
A huge thank you from the bottom of our hearts to everyone for your help and support!
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