London was born with Bi-lateral Coronal Craniosynostosis. A er this diagnosis, she was also diagnosed with Muenke syndrome, a new syndrome of Craniosynostosis. Little is known about Craniosynostosis, and since London’s diagnosis, the family has only found one other family with this diagnosis to connect with via the internet. At 8 weeks, London began her journey of having her skull and facial reconstructive surgeries completed. She spent her rst 6 months of life in di erent hospitals due to surgeries and complications. She wore a reconstructive helmet until age 2. At 6 months she had her rst seizure and didn’t have another until age 3. e doctors thought those seizures were febrile seizures. en, at age 5, London went into a severe epileptic seizure that lasted 4 hours. She was diagnosed with encephalitis and had 2 di erent viruses attacking her brain. e seizures continued. Her severe seizures cause her to awake with Todd’s paralysis, and she has to regain movement of the side of her body the seizure attacked. At age 8 doctors nally prescribed a medication that has been able to prevented them. At age 8 she had to go through another Craniofacial Reconstructive surgery. is was the most invasive one yet - creating more skull with her rib, designing a full brow bone (that she never had before) and adjusting her nose and eyes. Her head was fully shaved, and she had to return to school “looking like a boy” as she would say, but the surgery went great. London is doing much better now, but she lives in fear of that next surgery. She deals with some learning and social delays due to the damage from the seizures. London has always been an incredibly happy kid but since her surgery has dealt with some anxiety and PTSD. e family has hope that CC4C will make London realize she’s not alone in this battle.