Peu (Aditi), 15 years now, has neck control, no sitting balance, and no mobility or speech. Seizures start early on after birth in many children with CDKL5 despite a normal pregnancy and delivery with perfect scores. For Peu, it started 15 days after her birth. For a first time mother, seeing her child having seizures is traumatic. Witnessing it every day multiple times was terrible and the feeling that she might be in deep pain was agonizing. All this along with the challenges that a new mom faces. From then started the never ending effort to obtain a diagnosis through tests and get her seizures under control. The first few years were filled with numerous tests, multiple anti-epileptic drugs (AEDs), steroids, Ketogenic diet, and countless hospital visits country wide and abroad too. She broke her limbs, and had to undergo health issues such as fall in platelet count, severe acidosis, repeated lung infections, trembling of eye balls, and high BP. Eventually, we discovered and accepted that seizures would be a part of her life. We have our journey documented here
Hope is in our DNA.