An Amazing Little Girl with Rhombencephalosynapsis

<p><strong><em>Can you say</em></strong></p><p><strong><em>Rhombencephalosynapsis?</em></strong></p><p>This is the story of an extraordinary girl living with an extremely rare brain malformation.</p><p>With over eighteen surgeries and countless hospitalizations and medical procedures this incredible child has overcome more obstacles in her short six years of life than most of us endure in a lifetime.</p><p>Rhombencephalosynapsis gave way to a set of other difficulties including: Hydrocephalus Chiari Malformation feeding tube dependency Laringomalacia Microtia hearing and visual impairment . . . but through it all this child displayed a mind so brilliant and adaptable that she amazes and inspires us all.</p><p>I would like to offer hope to those new to the journey of parenting a medically fragile special-needs child. I want to share the realities we lived with- the challenges the pain the joy and all we have learned.</p><p>I would like to increase awareness sensitivity and familiarity to what life is like as a mother to a medically challenged child.</p><p><br></p><p><strong><em>They said she wouldn't she did . . . </em></strong></p><p><strong><em>They said she couldn't she can . . . </em></strong></p><p><strong><em>They said she won't but Oh she will</em></strong></p><p><em>Rhombencephalosynapsis/ Cerebello- Trigeminal Dermal Dysplasia Facebook Support Group</em></p>