Video: One in a Million

They say when I planned to do something - I never looked back and went forward. This is where my post stands out as I have finally managed to get my password back to access this account. Lots of things have happened since the 6 years have passed. My connection with wildlife tourism is very much there but in 2017 my wife and I were blessed with the birth of our little baby girl Anya. 

Anya’s diagnoses and life went on a FULL STOP 

No one would want their child to go through so much of hospital visits. Anya was around 10 weeks old and we as parents remember that morning so clearly. She had this scream and it was not a baby crying scream but a terror scream. She was playing tummy time with us. We lifted her up and Anya was looking on one side. Her eyes were all over the place and medically it’s called nystagmus. She had the left side of her body paralysed and stiff. The right side of the body was very floppy. We felt that she was having a seizure and we just didn’t know what to do other than start recording on our mobile phones (that’s one tip we give to presents with their children in Anya’s place). We did not call an ambulance but took her in the car. In between the journey, she looked like she was going into another seizure. As things progressed, we ended up with regular visits to the accident & emergency unit here at Edinburgh's Sick Kids Hospital. Finally, Anya was 6 months old when she was diagnosed with this ultra-rare neurological condition called Alternating Hemiplegia of Childhood or AHC.

Anya's condition is so rare that they say it's like 1 in a million who live with it. What were our chances !!!

This video was kindly made by my wife's cousin. Great work has been put in by Owen and sum's up our life living with Anya and her medical condition.

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