Hi, my name is London. I am 12 years old and have been diagnosed with a rare condition.
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London was born with Bi-lateral Coronal Craniosynostosis. After 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 first 6 months of life in different hospitals due to surgeries and complications. She wore a reconstructive helmet until age 2. At 6 months she had her first seizure and didn’t have another until age 3. The doctors thought those seizures were febrile seizures.
Then, at age 5, London went into a severe epileptic seizure that lasted 4 hours. She was diagnosed with encephalitis and had 2 different viruses attacking her brain. The 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 finally prescribed a medication that has been able to prevented them. At age 8 she had to go through another Craniofacial Reconstructive surgery. This 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. The family has hope that CC4C will make London realize she’s not alone in this battle.
|Tina Wissner||09/21/2018||$25.00||From our family to yours. May God bless you and keep you in the palm of His hand:) Love, Kurt, Tina, Ashleigh and Sara Wissner|