Thank you for visiting my Just Giving page and for your support with my London Marathon challenge!

I had written something to write here but I'm going to hand over to my sister-in-law, and Ayda's mum, who wrote this so eloquently for her festival Christening in 2019.  After everything my amazing niece, and god-daughter, has been through running 26 miles doesn't seem so bad!

"Ayda was born on 12th September 2016 and discharged the following day with a clean bill of health.

Over the next few weeks we noticed her poo was very pale and her wee was very yellow but we didn't think to question it and, with 5 1/2 years since Dexter had been that age, we couldnt remember any different. She was gaining weight and feeding well!

During the October half term we began to notice she was looking a bit yellow. We tried getting the sunlight to her but that didn't help. Then, during the first week back at school a dear friend who hadn't seen Ayda for a week noticed the difference and asked "Is she jaundiced?". At this point we knew we needed to get advice.

With a bit of a struggle we got an appointment (the GP didnt think she looked jaundiced!) at the Extended Jaundice clinic in Wythenshawe (although not particularly quickly!)

The Thursday morning appointment eventually came and by now Ayda was 8 weeks and 3 days old. They took urine and blood samples and said they would be in touch. At 2pm that day, the consultant rang. She explained that there are two types of jaundice. One isn't dangerous, the other is. Ayda's was the latter. She told us to come straight back to the hospital.

After what seemed like eternity we finally met the consultant and she said that she suspected that Ayda had a very rare condition called Biliary Atresia and would need an urgent operation. We were to be transferred to Leeds (the nearest specialist centre for Childrens Liver Disease) that night by ambulance and she would hopefully be operated on the next day. She went on to explain that Ayda would be having a "Kasai" operation and that this is most successful when performed before 8 weeks old. Ayda was 8+3! I remember clearly asking the Consultant if Ayda was going to die. She said "No - but she is seriously ill".

Jon was told to go and pack a bag as we would be in Leeds "for the foreseeable future" and we hastily made arrangements for Dexter to go and stay with Jon's Mum and Dad.

We arrived in Leeds in the middle of the night and the staff were lovely but because we we weren't from Yorkshire we were quarantined!

We eventually met one of the Liver Consultants who spoke to us about the Kasai and what it involved and also the fact that if it were unsuccessful, Ayda would need a transplant. Jon and I were horrified but the Doctor told us quite calmly that if you needed any sort of transplant, it was best to have a Liver transplant!

The following morning Ayda had an ultrasound scan and we met the Surgeon. He didn't say a great deal but he told usAyda had the most rare type of BA - a congenital cyst that was blocking her bile flow. He explained that he was trying to get a theatre and a team together to carry out what would be a very long and complex operation. We were eager for this to be done quickly but he assured us a couple more days wouldnt make any difference to the chances of success.

After a couple of false starts that involved Ayda being nil by mouth (just to add to the stress) she was eventually taken down to theatre at 8am on Monday 14th November. She was 9 weeks old to the day. Handing her over to the Anaesthetist was heartbreaking!

We were told the operation would be about 8 hours from beginning to end and that we should leave the hospital and try to keep ourselves busy. We went for breakfast in Carluccios and wanderered around the shops in Leeds but nothing took our mind of what was happening to our baby girl. We eventually got the call that she was in Recovery and that we could see her!

She looked so tiny with bandages and tubes everywhere. We were so pleased to see her but we were not prepared for what the surgeon then told us. When they opened Ayda up they found intestinal malrotation which they corrected during the surgery. She had no functioning Gallbladder and what was there had been removed. She didn't have a proper spleen but instead had several smaller spleens and for good measure they had removed her appendix!

These other symptoms were part of something called Splenic Malformation Syndrome which affects 20% of babies with BA. As well as making Ayda even more special, it also meant that the prognosis for her wasn't as good. The surgeon was happy with how the operation had gone well but commented that he had never a baby with Ayda's symptoms!

There were tubes everywhere and it was so hard to cuddle her. Ayda was on an epidural for 2 days after which time they switched to Intravenous Paracetamol. Within about 4 days she was on no pain relief at all - amazing! She had to have a blood transfusion the day after the op but seemed to rally after that.

Whether the operation had been a success or not would depend on whether Ayda cleared her jaundice in the coming days.It was a case of "wait and see". In the meantime Ayda wasnt allowed food. Listening to her cry was excruciating and this was when her dummy attachment really began! Eventually the nutritionist (whose office was next to our room) couldn't bear it any longer and she persuaded the Doctors to let her have some milk.

Once Ayda actually had some food inside her we were really anxious to see what her first nappy would be like - we were also looking out for her appendix which we were told she would pass within a few days! It was with some trepidation that we changed those first few nappies but we could see that colour was starting to flow. Over the next few days her jaundice cleared - her eyes first and then her skin.

As she got stronger we were allowed to take her out of the hospital for walks around Leeds and then, 2 weeks after we arrived we were told we could take her home. We thought we would never get our heads round all the different medicines she needed and the list of things we were told we needed to look out for seemed so daunting. Just managing her prescriptions felt like a full time job. Even her formula was prescribed!

Ayda's first year was tricky. There were several visits to hospital in Leeds and Manchester as everytime she had a temperature we had to get her checked out. Then in March 2017, the day before Dexter's birthday, Ayda was admitted to hospital with Meningitis. We knew this was something she was at risk of due to the polysplenia but we had been told her daily dose of Penicillin would go a long way to negate that risk. After a 2 week stay in Wythenshawe, we were discharged.

In August 2017, just as we were due to fly off on holiday, Ayda was once again seriously ill. What had started off as Tonsilitis had progressed to Cholangitis, a known complication of the Kasai procedure. This meant another 2 week stay in hospital and a cancelled holiday!

Ayda's second and third years have undoubtedly been easier than her first but have not been without their ups and downs.Life with a Liver kid is a bit of an emotional rollercoaster! As if the day to day isn't worrying enough, things like childhood illnesses, immunisations and Grommets play their part.

So - the question everyone asks is "Is she OK now?"

The answer to that is "she is OK at the moment". Her doctors In Leeds are pleased with her and she is developing as she should both Physically and Mentally but no-one can rule out a transplant at some point in the future.

Her late diagnosis means that her liver is damaged and it cannot be repaired. The big question is how well and for how long will Ayda's own liver cope?

Less than 1 baby is born every 2 years in the UK with Ayda's exact condition and the Kasai procedure has only been carried out in the UK since the 1970s, prior to that the outcome was pretty bleak.

So why are we telling you all this? Well 3 reasons:

The first is so that you know why we are so incredibly proud of our very own warrior princess

The second is so that if you can spare a few quid please chuck it in the bucket! The money raised helps to fund life changing research and is quite literally improving the outlook for BA babies!

And the third is to raise awareness of this condition. If you know anyone having a baby make sure they know poo should be bright yellow (mustard or dafodill depending on breast or bottle) - and if it isn't, get it checked out. The earlier the diagnosis the better."