As many of our close friends and family know Gracie has not had the easiest start to life. From early on we noticed developmental delays and after multiple testing, bloods, MRIs under GA, x-rays and specialist appointments, we are still searching for answers.
For many years we were told that Gracie had a dandy walker malformation however the medical teams were unsure why this had left her with so many challenges. Last year Gracie started having cluster seizures which were terrifying because she would turn blue and stop breathing when she had them. She was admitted to the ICU and ventilated because they couldn’t be controlled. Since then we are still battling to control these and have recently started a new type of medication to trial. This is her 5th medication change.
We have now been told by her neurologist that she may have a rare and genetic seizure disorder that affects only about 600 people in the world. CDKL5. We are waiting for genetic confirmation which can take up to 3 months to come back. And so the search continues.
As Gracies seizures are uncontrolled and potential life threatening and unable to be be detected with regular seizure monitoring we are hoping to raise enough money for a seizure dog. This will be able to help us identify when Gracie is going to have a seizure, particularly at night so that we are aware and able to intervene. Seizure dogs are $30,000 to train and we need to donate $20,000 to be eligible to purchase one for Gracie.
Thank you so much for the continued love and support for our family. There are no words that can be said to express our appreciation.