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Here are some words from Anya's parents, Romayne's niece and her husband, about their beautiful daughter.

"At 10 weeks old Anya had what looked like a focal seizure. After the initial diagnosis, thinking it was Sandifer Syndrome, it quickly became apparent it wasn't. She was given the diagnosis of focal epilepsy however didn't respond to several anti-epilepsy drugs and her EEG was not in keeping with epilepsy. After 4+ months of weekly (often 2-3x weekly) emergency trips to the Sick Kids Hospital in Edinburgh she was genetically tested and diagnosed with Alternating Hemiplegia of Childhood (AHC) at 6 months old.

It has been an emotional rollercoaster but we have had amazing support from family, friends and the wonderful NHS staff at the Sick Kids Hospital Edinburgh.

AHC is a devastating condition. It is exceptionally rare, 1 in a million, and Anya is the only child in Edinburgh with this condition and the second child in Scotland. Those with AHC are heroes for all the daily hurdles they go through. AHC can present with many neurological features: nystagmus, dystonia, hemiplegia, paralysis, feeding difficulties, developmental, physical or cognitive disabilities. It affects each individual differently and we don't yet know how Anya will be affected in the future.

With advancements in 2012 following discovery of some of the genes that cause this condition there is hope. There is hope that with more funding into research a treatment that works or a cure can be found. In the meantime, Anya's wonderful smiles and laughter are our little ray of sunshine and hope.

Lots of love Katherine, Abhishek and Anya xxx"

We hope this will raise awareness of this condition and all the wonderful AHC heroes and their families who live with it every day, and to raise funds for research.

Please look at these sites for more information on AHC:

https://www.youtube.com/watch?v=se6i5tD4uow

https://www.youtube.com/watch?v=0OZIZ18W038

https://rarediseases.org/rare-diseases/alternating-hemiplegia-of-childhood/

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