After many tears, and even more prayer, doctors made the decision to take out her breathing tube, and my parents agreed. They did not think she'd make it and we said our goodbyes.. but, to everyone's surprise, her little lungs were able to handle it and she began breathing on her own! This was Mariella's first miracle.
Mariella’s condition is called HIE, which is the medical term for brain damage due to lack of oxygen. While we are happy to see her incredible progress over the last two years, she remains developmentally delayed in many areas. My sister has high tone in her lower extremities and low tone in her upper extremities.. in other words, her bottom half is super tight and her upper half super floppy. My sister has trouble sitting up on her own and does not walk or crawl. She does not handle eating much by mouth and has been on a feeding tube since birth. She is non-verbal and startles easily. She has difficulty with her grasp and controlling certain movements. The list could go on, but essentially, she faces many challenges to leading the life of a typical child.
This is why my family is so hopeful in our effort to raise money for three major treatments we'd like to put her through. The first I will explain is Hyperbaric Oxygen Therapy. HBOT uses high pressure oxygen to treat an array of brain disorders. It essentially "wakes up" areas of the brain that were previously dead tissue. After meeting other parents of children with HIE, my mom became familiar with a facility in New Orleans we would like to send her to. Research shows it can be highly effective, but also pretty costly, and unfortunately, not covered by insurance for her condition. For the 40 sessions required, it costs about $8,000.
The second goal is to send her to receive stem cell treatment in Panama, which has one of the best programs for stem cell therapy in the world. Mesenchymal stem cells promote neuronal growth, new blood vessel growth, activation of glial cells, synaptic connection, axonal re-myelination, and decrease cell death. These are all fancy biology terms, but essentially this treatment will help repair Mariella's brain! Again, it is a costly one, with prices beginning at about $16,000, and alas, not covered by insurance.
Once we've completed these two treatment methods, we plan on sending her for intensive physical, neurological, and occupational therapies, likely through the NAPA center, CECO or both. The NAPA center works to incorporate a wide range of therapies into a customized intensive program specific to the needs of the child. The Conductive Education Center of Orlando (CECO) provides a unique, holistic educational approach to help children with motor disabilities achieve their greatest level of independence through physical and cognitive activities. Both of these programs have varying costs, but are about $5,000 each. We’ve heard of lots of positive outcomes resulting from these programs.
My sister is already a miracle, without a doubt, and we hope to see more miracles happen for Mariella through these treatments. On behalf of my family, we thank you for taking the time to read her story and consider donating.
For more information on Mariella’s condition, visit: https://www.hopeforhie.org/whatishie
For more information on these types of therapy, check out the links below:
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