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Join Thalia's Brain Surgery Battle

$27,806 of $40,000 goal

Raised by 332 people in 7 months
This is our beautiful warrior Thalia Breeze.


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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It has been quite some time since I have been able to give an update on Thalia's progress. Things have been progressing very slowly. After her last surgery to enclose the distractor in her head, the distractor came right back out of the sutures and has been exposed since. For most patients it isn't an issue, but due to Thalia's immune system she has trouble fighting infections. So, she has already been on 3 doses of antibiotics for the distractor being infected. Also, she recently had to undergo oral surgery. She ended up having 5 extractions, 10 fillings and 3 crowns. It was very painful for her but she was as positive and strong as she has always been. She is scheduled to get an MRI next week to see the progress of her skull growth. All of us including Thalia are ready to get rid of this distractor. It bothers her all of the time and she is getting restless with not being able to go out in public as much as she would like. We have been trying to keep her busy with walks along the beach boardwalk and at Newport Back Bay. But, she wants to go swimming so bad and can't because of her distractor. Hopefully we can get a surgery scheduled soon and she can get on the road to recovery. This process has definitely taken longer than we anticipated and it has created a toll on us. We would like to thank everyone for all of your love and support. I will give another update once we get the results from her MRI.
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Thalia is going in for a surgery this morning. We stopped expanding her skull a few weeks ago. So it is the time to disconnect a small part of the distractor. But unfortunately her skin grew over it and it was getting infected. So instead of a simple office visit the surgeon needs to do it surgically. Bad thing is it's an extra surgery we weren't expecting. Good news is he is going to be able to close up the skin so that she can keep her distractor in her skull for longer. Usually they have to take the complete distractor out sooner due to infection reasons. So this surgery means more time to wait for her skull to grow and hopefully it will be less likely for the surgeon to have to do any bone graphs later. #hydrowarrior #slitventriclesyndrome #chiarimalformation #thaliasbrainsurgery #22q #digeorgesyndrome #chdwarrior #thaliabreeze
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The last few weeks have been pretty tough for Thalia. Her skull has definitely been expanding which is a good thing. But with so much change and movement with her skull and brain it is definitely affecting her pain level. The pain has been excruciating and she is having a tough time with taking any food and fluids in. We unfortunately had an ER visit to try and get her pain under control and get some fluids in her. It is extremely stressful because with her diabetes insipidus she needs to stay hydrated but with her DiGeorge syndrome taking her to a crowded emergency room with sick children is dangerous. We have been trying everything to help with the pain and nausea. We've been able to take her to her neurosurgeon's wife who is an acupuncturist which is helping a little. But our poor sweet Thalia is definitely not doing so good. We are hoping this is just a small stage of this process and hopefully she will start feeling better soon. We did find out this process is going to take a bit longer than we expected. I guess after we are done with expanding the skull she will still need to keep the distractor in for at least two months while the bone of her skull heals before they surgically remove it. So it looks like we may have the distractor in until at least June. This has all been extremely overwhelming it we are trying to stay strong for Thalia. We thank everyone for all of your support and I will try and update more often.
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I am extremely happy to update everyone with the news that Thalias distractor is indeed working even though there is a piece that has broken. Her head circumference was 5 millimeters larger since last Monday. Super happy that we are seeing some progress but still a long way to go. I will be cranking the distractor for at least 7 more weeks if not longer. Then they will be surgically taking the distractor out. Just trying to keep Thalia healthy and flu free as much as possible. The poor little girl cannot go in public and she is getting cabin fever. We have been trying to keep her distracted with lots of long drives, stroller walks and bubbles in the backyard.
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$27,806 of $40,000 goal

Raised by 332 people in 7 months
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