Saying Ohelo to Grayson's Legacy Support Trust

We are proud to be able to tell you about our latest 'giving back' project. Graysons Legacy Support Trust is a newly formed organisation with a great cause and a heart-moving story. It was set up by Faye and Craig in honour of their son, Grayson, who sadly passed away last year from a very rare brain disease called ANE. They aim to raise awareness of ANE and support other family’s and children who have been affected or are living with this rare condition. We were delighted to be able to donate £700 of products to this amazing cause, as well as creating some amazing co-branded merchandise to help their fundraising efforts. 

We spoke with Faye and Craig to bring you the story behind Graysons Legacy Support Trust in their own words: 

Hi Faye and Craig, so Graysons Legacy Support Trust is a fairly new non-profit organisation. Can you tell our Ohelo family what it is that you guys do?

Hi there. So here at Graysons Legacy Support Trust (GLST) our aim is to spread awareness of Acute Necrotizing Encephalopathy (ANE) which is the rare disease that our son Grayson passed away from in March 2020. We have also seen first hand the support that is needed for bereaved parents as well as organisations and the NHS that support bereaved parents and families. We hope to be able to offer support to families where they have yet to find the help they need & support breaking the taboo and silence around baby loss.

Your story for starting your the Grayson Legacy Support Trust is very moving – can you share a little of it with us here?

So our beautiful & healthy baby boy, Grayson died aged 10 months to an ultra rare disease called ANE. On the 17th March, Grayson woke during the night with a high temperature which continued throughout the day and into the next day. When given calpol and nurofen his temperature would lower and Grayson continued playing and eating happily and his sleep was not really affected. Cutting his two top teeth and a slight cold we assumed this was part of this process. On the third day, Graysons temperature had subsided but he was a little more grouchy, wanting more cuddles and chill time. Late in the afternoon, he was sick so we called the GP. Due to the nature of Covid, we received a video call from our doctor who believed he had a viral infection and to see how he went over night. Grayson had an unsettled night and in the early hours of the morning (4am) woke with a high pitched cry without any tears. We called 999 but we were not classed as an emergency as his breathing was fine. An out of hours GP instructed us to go to A&E. We did not make the full journey to the hospital but instead ended up waiting on the side of a road for an ambulance as Grayson had a localized seizure in his car seat.

On arrival to the hospital in an ambulance, Grayson was given anti-seizure drugs and after numerous tests and CT scans, it was advised that he get transported to John Radcliffe as they had noticed minor abnormalities on his brain. Something that we were told was to be expected after a seizure. Once again due to covid we were unable to be with Grayson on his journey so after he was intubated, we followed on in the car. On arrival we were unable to see Grayson for a number of hours. At 10pm, we were taken to a family room to be told that they did not know what was taking our baby boy and that he was severely brain damaged at this point. The minor abnormalities had grown rapidly. Over the course of the night and with a dose of Immunoglobulin, Grayson would show us whether he was able to fight this. After a medical call with 8 other doctors around the UK came the diagnosis of ANE. After an extremely tough night, we were faced with the unbearable news that Grayson has deteriorated further and medically the decision was being taken out of our hands. 

To read our full story, please do take a look at our website- www.graysonslegacysupport.co.uk

Here at Ohelo HQ we had not come across ANE before speaking with you guys. Are there any websites / sources of information you would recommend to people wanting to find out more?

Absolutely. Please do take a look at the following and help to spread awareness. Although this is said to be an Ultra rare disease, we are shocked to see how many cases there are. Is it just that the awareness is not there and therefore a diagnosis is not always accurate? 

We found lots of helpful information via: https://aneinternational.org/acute-necrotizing-encephalopathy/

You can also find details via their facebook page.

What do you have planned for the next year as a non-profit?

We have some more fundraising ideas (should covid allow) and also have some merchandise ideas for the trust. We hope to contact some of the major hospital branches that specialise in baby, infant and children's care to include the subject of ANE and awareness in their staff training. 

How can people get involved with The Grayson Legacy Support Trust?

Firstly we want to thank all the support we have received so far this year. We understand that it is not an easy trust to follow and can often lead to a lot of questions and fears. We know because we live with this everyday. But to continue with Grayson Legacy and spreading his smile, we must continue to fight and spread the awareness so that another family does not have to suffer the same as ours. We must break the taboo around baby loss and stop those who suffer in silence. 

You can support GLST by taking a look at our website and signing up to our news/events & blog page. Give us a follow us on Instagram and Facebook and share our page with friends and family. Engage in our posts and share our fundraising events.
https://www.graysonslegacysupport.co.uk
IG: graysonslegacysupport
Facebook: Graysons Legacy Support Trust

Thank you so much for all your support- it really does mean the world to us.
Love Faye & Craig

We were delighted to hear that they sold out of tumblers within 24 hours. Check out their website to get your hands of one of these special bottles - but you will have to be quick, they are selling fast!