Monica Rose Care Fund

Monica Rose Lewis was born in Athens, Greece, on May 3, 2016 to Caitlin and Benjamin Lewis. During an extremely difficult pregnancy, it was discovered that Monica has a rare brain malformation called Rhombencephalosynapsis (RS). In this condition some, if not all, of the division between the hemispheres of the cerebellum is missing and the hemispheres are fused together. This malformation comes with a host of associated conditions including developmental delays, muscle control difficulties, sleeping and eating difficulties, and sensory processing disorder. Acquiring fine motor skills is quite challenging, and Monica was a late crawler and walker. RS is so rarely diagnosed that not much is known about it and few even in the medical community are aware of the condition and the ramifications.

While some children never do walk or speak, Monica has been in therapy from a very early age to help her lead a more normal life. She continues to overcome many of these struggles and is now walking and starting to speak a few words. Monica is an extremely happy child and brings light and joy wherever she goes.

Unfortunately, Monica has recently been diagnosed with yet another rare disease, erythromelalgia (Man-On-Fire Syndrome), which causes hot and very painful swelling in her hands and feet. A specialist is currently exploring treatments for her in the hopes that the flare-ups and pain will be reduced significantly.

Monica and her parents currently live in Greece but will be returning to the United States sometime in the fall when Benjamin has a change in job position. While medical care still comes at a price, the nature of the healthcare system in Greece has in many ways made it less complicated and expensive to provide Monica the care she needs. However, once they return to the U.S., medical costs will become exorbitant. All proceeds from her GoFundMe page will go toward defraying her healthcare costs and supporting her medical needs.
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Cara-Anne Phillips Stanfill
Jackson, TN

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