Kyra’s Second Brain Surgery & Ongoing Expenses-June 6, 2025
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I never imagined I’d be writing this again. Asking for help is never easy, but here we are, facing another impossible challenge, and I can’t do this alone.
Two years ago, my daughter Kyra underwent Chiari decompression surgery when she was just 9 years old. We had hoped it would give her relief, but instead, it was only a temporary fix—a bandaid on a much bigger problem. Over the past two years, her health has continued to decline. With every step forward, it feels like something new gets added to her plate. My sweet girl just can’t seem to catch a break.
We have spent countless hours in doctors’ offices, chasing answers. Now, at 11 years old, Kyra has been diagnosed with Chiari Malformation, Intracranial Hypertension, POTS (Postural Orthostatic Tachycardia Syndrome), Chronic Lightheadedness, Non-Epileptic Seizures, and Hypermobility. Yet, despite all these labels, we still don’t have an answer for her chronic pain.
Recently, everything escalated. She spent two days in the hospital due to sudden seizures, came home for only three days, and then was rushed back for another nine-day stay because of severe head pressure. When medication wasn’t enough, her neurosurgeon performed another lumbar puncture, and with those results, we were forced to make an impossible decision.
We were given three options:
- Repeat the same high-risk brain surgery she had two years ago
- Keep doing lumbar punctures, which is risky given her condition
- Go through an intense, two-part surgery called Posterior Vault Distraction Osteogenesis (PVDO)—a procedure that, while difficult, offers the best chance at real relief.
We are choosing PVDO because it’s her best shot at a better quality of life. It’s a long road ahead. After this first surgery, she will have metal distractors in her skull, which the doctors will adjust daily with a key to help expand the space for her brain. Then, in three months, she’ll need another surgery to remove the hardware.
Kyra’s hospital stay is estimated to be around 25 days, but it could be longer (there's a possibility it could be shorter but they said to plan on 25, especially with her age as older kids don't heal as quickly. But fingers crossed). I will be staying with her the entire time, and while I will do what I can to work remotely, my main focus will be taking care of her. This means our financial situation will be even more difficult than before. Her surgery date is 3/27/2025.
I hate to ask for help, but the reality is—we need it. We are facing overwhelming medical bills, household expenses, and the cost of simply getting through a month in the hospital. Any support will go toward:
- Medical bills and expenses related to her surgery
- Household bills while I’m unable to work full-time
- Hospital essentials to make our stay as comfortable as possible
- Food, since I won’t have a car and will need to rely on hospital meals
- Unexpected expenses that will inevitably come up
If you’re able to help in any way—whether by donating or simply sharing this with others—it would mean the world to us. More than anything, please keep Kyra in your thoughts. She is the bravest, strongest girl I know, and she deserves a chance to heal and live without constant pain.
AMAZON:
PHOTO OF PROCEDURE:
Organizer and beneficiary
Kristen Haskins
Organizer
Casselberry, FL
Nicholas Aguirre
Beneficiary