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Hello everyone,

This is James ( our little Kabuki Lion). We are fundraising for Kabuki Syndrome foundation, which is one of two charities close to our hearts.

James and his older sister were diagnosed with Kabuki Syndrome on the 4th of April 2021.

They both have type 1 Kabuki Syndrome, our daughter has mild Kabuki whilst James has a lot more health issues and daily struggles.

This year we are going over to America for tests, research and to meet with the doctors who specialise in Kabuki. This is all being kindly supported by the Kabuki Syndrome Foundation. So as a huge thank you to them we are holding a couple of fundraisers for this wonderful charity.

Back story.

James was born prematurely at 35 weeks and needed a lot of intervention in the special care unit. He was born with sepsis, respiratory distress, jaundice and a few other health concerns. He got his name little lion in the special care unit as he used to try and open his mouth in there like a little lion but no noise would come out,;he was so brave like a lion and his first outfit he got to wear at 6 days old was a little lion baby grow, therefore, the name stuck. James, our little brave lion.

After a week of needing support from the special care unit he was able to graduate from there and stay on the mother and baby unit for a few days before coming home.

Throughout James first year he had multiple infections, he wasn't hitting any milestones and we became a little concerned. There were a few similarities between James and his sister so after a while of investigations, which wasn't getting us anywhere, we were offered genetic testing in 2020. When the results came back they identified as Kabuki Syndrome type 1 in April 2021.

Since his diagnosis he has required lots of operations, interventions, and medical support.

James has now started Primary School and he is doing amazing there. They support his every day needs and are able to give him what he requires medically throughout his day, which keeps his routine the same.

Although his infection levels have increased and a few other issues have arisen since starting school ,this is mainly to do with James not having a good immune system, leading to him picking up everything and anything very quickly.

So this February 14th his little Primary school are holding a "Go Green For Kabuki day" - hoping to raise awareness, support and funds for the charity.

In addition, throughout the month of March, we will be holding our own family challenge by taking on 62 miles. We will be doing this on foot, either walking, running or James on his little scooter.

Thank you for reading his story. x