I am hoping to raise £2500 so we can dedicate a memorial bench at St Fagans National Museum of History in Wales, for my beautiful godson Lewis, who sadly passed away in 2018, aged 18 months. His parents, Angela and Chris Grech along with his big brother Daniel, are left with a massive hole in their lives and they miss him greatly although baby Abigail arrived this recently and brought much joy to the whole family.

Please read Angela's beautiful and touching words below:

Lewis was a gorgeous boy who was very much loved by not only us, but all the people who met and cared form him. He had a cheeky personality which comes across in this little video of him.

Lewis was born with a rare genetic disorder called Treacher Collins Syndrome. This affects only 1 in 10,000 births and affects the growth of bone and tissue in the face. Lewis had a severe form of this condition and was born with no ears and was moderately to severely deaf, he was also unable to swallow or breathe by himself. He was fed via a stomach tube and had a tracheostomy tube to enable him to breathe.

Sadly, Lewis passed away on the 1st of December 2018 due to breathing difficulties, he was only 18 months old. We are heartbroken but have vowed to keep his memory alive for as long as possible and one of the ways we will do that is by raising money for charity.

Despite his complex medical needs Lewis was a very happy little boy and always smiling. He was doing really well, and his death was very unexpected.

Through a number of charity events we have not only successfully be able to raise awareness of Treacher Collins Syndrome, but also money for Charity. To date we have raised over £6000 in Lewis's name. This has been split between Noahs Ark Children's Hospital (Lewis was there for 3 months, plus numerous operations), Love Me Love My Face (a charity for people with TSC) and the Ronald McDonald House here in Cardiff. We have had friends run marathons, done singatons and run a Beatles singalong to name but a few. Lewis (And Chris!) have also been in the local paper a few times.

https://www.barryanddistrictnews.co.uk/news/16093197.baby-inspires-dad-sing-noahs-ark-appeal/

https://www.walesonline.co.uk/news/health/we-tell-four-year-old-15676889

In December 2019 we we blessed with our third child, Abigail, and would have been Lewis's lovely baby sister. We will be raising her with the knowledge that she has two brothers, and Daniel often talks to Abigail about Lewis.

St Fagans is a place that is special to our whole family, somewhere that we always visit and have a lot of family photos and lovely memories over the years. It would be really special for us if we could sit on Lewis's bench in a place which he loved.

We will never be able to have a photo of our three beautiful children together. Yet we will be able to have pictures of Daniel and Abigail, along with their cousins, growing up on Lewis's bench.

Thank you for reading Angela and Chris' story

Marsha xx