Sophia's Medical Expenses

Sophia's Medical Expenses

From Audrey Marandino

Hi everyone! Many of you know my brilliant, talented daughter Sophia! She is going through rounds of medical testing right now, to nail down some diagnoses-some of which require out-of-pocket expenses.

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Update #2

about 1 month ago

Hi everyone! I wanted to thank you all so much for donating- we've officially reached the half way point!! ❤ I am so grateful for your support and we have already learned so much about Sophia by being able to see this doctor. We have to see him 3 more times this week- please consider sharing as we rally to get this covered for her! We love ya!

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Thank you all so much for coming to Sophia's Page! I wanted to give a more in-depth look at what's going on with us so that you can stay informed. Donating is completely optional- ALWAYS. If you could share our story, that would be extremely appreciated! I KNOW there must be other kids out there, just like her! 

When Sophia was very young, she had trouble even with the basics- feeding/latching, waking. Later on she would be diagnosed with severe developmental delay (gross motor), Sensory Processing Disorder (vestibular), hypotonia (low muscle tone), mild developmental delay (speech). She went to PT/OT for a better part of a year and got up and walked independently shortly after her 2nd birthday! 

She has mostly cruised through from then to now, with only a few minor hiccups in the road. Currently, we are dealing with new challenges: getting the right diagnosis for our girl. Hypotonia very well may be at the center of everything, but it is a Symptom, not a cause. Her PCP has referred us to multiple specialists, many in network, some not. Not to mention, out of pocket tests like the SIBO 3 hour breath test and her Comprehensive GI test were considered "not medically necessary" by insurance! Never mind that she is on antibiotics right now for a infection found by that very testing! (Small Intestine Bacterial Overgrowth). We also found mild anemia that stems from a rare blood disorder called Thalassemia, of which she has the beta minor type. Some things we can correct with diet and supplements- some things we need to turn to the experts for! Most notably, we need to see a Neuro/ANS Dr, a pelvic floor physical therapist, and a Geneticist all in the near future. I hope that all of them have the answers we seek. Any funds raised from this will go towards those people mentioned above, the supplements, or my parents, who have been extremely generous with Sophia's healthcare all of these years. Thanks so much for reading and for following Sophia's journey. 

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Audrey Marandino posted a new update:
about 1 month ago

Update #2

Hi everyone! I wanted to thank you all so much for donating- we've officially reached the half way point!! ❤ I am so grateful for your support and we have already learned so much about Sophia by being able to see this doctor. We have to see him 3 more times this week- please consider sharing as we rally to get this covered for her! We love ya!

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Audrey Marandino posted a new update:
2 months ago

Update #1

On 9/30 we went to an amazing neuro/ANS that diagnosed Sophia with POTS! He was completely out-of-pocket, but SO WORTH IT, and thanks to all of you, I was able to pay him. What a relief to have an answer and not just another question mark. Thank you for your support!

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