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Katherine Behl avatar
Katherine Behl

Team Anya

Running the Edinburgh 10km in May 2018 for Alternating Hemiplegia UK because baby Anya has recently been diagnosed with AHC

548 %
£5,483.62
raised of £1,000 target
by 150 supporters
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  • Team members: Olivia Walesby, Rebecca Walesby, Johanna Low, Eireann Allan, Morven Wilkie, Jacqui Patterson, Louise Douglas
  • Event: Edinburgh 10K 2018, 26 May 2018
  • Team: Team Anya

Alternating Hemiplegia UK

We support families and aid research to find a cure for this rare condition

Charity Registration No. n/a

Story

Thanks for taking the time to visit our JustGiving page.

I am running the Edinburgh 10km with family and friends for Team Anya :) 

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 2-3xweekly) emergency trips to the Sick Kids Hospital in Edinburgh she was diagnosed with Alternating Hemiplegia of Childhood (AHC) at 6 months old with the results of the genetic testing.  

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. 

We are running for baby Anya to 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. 

No donation is too small.  Thank you for anything you can contribute. 

Thank you so much for visiting this page

Lots of love, Katherine, Abhishek & Anya xxx


Please look at these sites for more information on AHC:

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

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

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


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