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Jon Else avatar
Jon Else

Ayda is our hero

I am running the London Marathon for Children's Liver Disease Foundation because I want to raise awareness of Biliary Atresia

215 %
£6,476.59
raised of £3,000 target
by 196 supporters
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  • Event: London Marathon 2018, 22 Apr 2018

London Marathon 2018

Support Team CLDF taking on the London Marathon and help fight childhood liver disease.

Charity Registration No. 1067331

Story

Thanks for taking the time to visit my JustGiving page.

Back in November 2016, our amazing daughter Ayda was diagnosed with a rare liver condition called Biliary Atresia  (BA).

Ayda had developed jaundice and we took her to hospital expecting to be told that it was just a normal newborn thing and nothing to worry about.

We could not have imagined that less than 24 hours later we would be told to go home, pack a bag and then be taken over to Leeds by ambulance in the middle of the night.

The team at Wythenshawe suspected it was Biliary Atresia but needed the experts at Leeds General Infirmary to confirm it.

Ayda was just over 8 weeks old when the doctors at Leeds confirmed it was BA and told us that Ayda would need an operation called a Kasai to save her life.  

After what seemed like a lifetime of waiting on the children's ward in Leeds  (but was only actually 3 days) we kissed Ayda goodbye on a Monday morning and placed her in the hands of the surgeons.

It was the longest day Alex and I have ever known but after a 9 hour operation we were allowed to see her and give her a kiss.  Then after two weeks of recovery we were allowed to take her home - armed with advice leaflets, synthetic baby milk and all of the medicine that she still needs to take every day.

She is now 18 months old and despite two admissions to Wythenshawe firstly for meningitis and then a liver infection called cholangitis she is doing fantastically well.

We went back to Leeds last November for a one year MOT and the Doctors were very pleased with her progress.  

Ayda has been through so much in short life but has done so with a smile on her face and a fire in her belly.  She is the bravest person we know and she really is our hero.

There is no cure for BA and the Kasai operation is probably not a long term solution.   We don't really know what the future holds and Ayda may need a new liver at some point but we will cross that bridge if and when we need to.  

There were some early signs of the disease that we would now be able to spot - pale, clay coloured poo being the biggest give away.  We know this now but we didn’t at the time.

We still spend a lot of time discussing the colour of Ayda's poo and still occasionally panic when it goes pale - which it did when she had cholangitis last summer.    

I will keep posting the Children's Liver Disease Foundation's (CLDF) warning cards on Facebook as it may help other parents spot the signs earlier than we did.

Early intervention is vital with BA to minimise the liver damage and at 9 weeks Ayda was older than a lot of babies that have a Kasai.

She is developing into quite a headstrong little character but that spirit and determination has served her well so far.  She is a little daredevil  and now she can walk she loves climbing on anything and everything she sees.

She is happy and healthy and is loving nursery and her Wednesday play days with her cousin George at Grandad Pat and Nana Lil's.

Having seen what Ayda has been thorough and sat by her bedside in the darkest of hours I will never again say that I cannot do something. 

Alex, Dexter and I are just so proud of her.

CDLF do a fantastic job in raising awareness and supporting children and families with liver disease and I want to do my bit to help them by running the marathon.  

If you could sponsor me that would be fantastic and very much appreciated.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.

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