living with hydrocephalus schizencephaly and epilepsy

By claire, United Kingdom, March 5, 2014

Hi my name is claire I have a daughter who is 3 yrs old she has hydrocephalus schizencephaly and epilepsy I have known she had problems from pregnancy n throughout the odds she battled through it and came out screaming on the 23rd September 2010 :D since then life has been a rollercoster ride in the last three yrs she has been poked prodded operated on ventilated hospitalised from illnesses n siezures that have lasted 2 hrs at first drs didnt have much hope for her sayin she wud only have a short life span and basically won't be able to do anything for herself which was heartbreaking but as time went on she started to prove people wrong she is able to hold her head up unsupported was able to roll onto her side and now the biggest thing ever is to be able to sit on her own wivout support u can believe how excited I was at that :) even thou kayla has all these difficulties she still battles through it wiv a massive smile on her face times can be hard but when u see her face light up wen she sees me its well worth the fight n heartache n tears shes an inspiration to us all :) thanxs for reading

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Share your story

(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.