Hannah was born full term and was a beautiful baby and appeared to be the picture of perfect health but at 24 hours old she had what we later learned was her first seizure. She went totally blue in the arms of her mummy and was rushed to special care. After a few days of good health we were sent home and all seemed OK until the seizures returned at 5 weeks old. Hannah had a seizure every time she fell asleep. It was heartbreaking to see a tiny baby go through so much. She endured countless blood tests, EEGs, MRI's and lumber punctures to simply be sent home with a diagnosis of epilepsy. Her whole family were in shock. Hannah was on a cocktail of medications which didn't even touch her seizures and wiped her out. She was having up to 13 seizures a day at this point. The drugs continued with new ones being rolled in and out and her development delay began to become apparent. At 2 years old she had no words, couldn't sit, stand or grasp a toy. She was delayed and still having countless seizures. At this point her diagnosis came. She had a recently discovered condition called CDKL5 which is closely linked to Rett Syndrome.
The diagnosis gave answers but didn't really help as the condition was so unknown she was only the 18th in the world to be diagnosed. Over the next few years, she learnt to smile and laugh and at 6 years old mastered the art of giving hugs which was priceless.
At the age of 7 Hannah was diagnosed with scoliosis, curvature of the spine and prescribed a spinal brace to wear 24 hours a day. Her seizure has slowed down and so had her appetite so at the age of 8 she had a gastrostomy so she could be fed directly into her tummy. This was a turning point. Better posture and more calories meant Hannah came alive and she was more alert and awake than ever. The seizures were still there but not as often as they used to be.
Life is busy for Hannah. She attends a fantastic special school full time but has to squeeze in regular appointments for her back and blood tests for her epilepsy and thyroid issues. Now at 11 Hannah still wears her spinal brace but her curve is getting worse as she is growing so quickly. Her seizures are still there and always will be but less frequent at the moment, they will come back hard, they always do, but she will keep smiling.
Hannah recently got an amazing walker and was able to take a few independent steps for the first time at the age of 10. We are working hard on keeping her mobile in the hope of trying to avoid spinal surgery.
The seizures make her long term prognosis unpredictable but each day she smiles and giggles and gives the best hugs ever. X