In Loving Memory
Rycroft passed away last month at the age of 16 months following a bone marrow transplant, which was needed due to Shwachman-Diamond Syndrome (SDS). His parents are sharing his story to raise funds for the hospitals that provided outstanding care for Rycroft and their local SDS organization (SDS UK) which provided support during Rycroft's challenging SDS journey.
Rycroft's parents Andrew and Catherine shared the heartbreaking news on Twitter:
Rycroft was a happy, shouty, beautiful little boy and it seemed like everyone that met him fell in love with him. He loved to crawl, even though his condition made it hard for him to lift his head. So he crawled backwards and upside down. He was surprisingly speedy.
Rycroft was a world champion sleeper. With no soothing or assistance of any kind from us, he could be sparko in seconds. He would wrap his favourite toy, BunBun, around his head and that was the sign he was off to . BunBun is still with him now, friends to the end.
Rycroft seemed to like Status Quo and other DadRock. He'd certainly bash his toys along to the music. If that was actually a sign you wanted it turned off, then sorry Rycroft.
People with SDS are much more likely to need bone marrow transplants than the general population. We think Rycroft may have been the youngest SDS patient in the UK ever to receive one, and perhaps the third youngest worldwide.
The transplant went well, but he later developed an infection in his lungs, and was transferred to ICU. He had to be sedated and put onto a ventilator. I found it difficult to be with him, him virtually motionless, me feeling like a spare part during my son's toughest hours.
What I found really helped was reading to him. I read him all of William the Conqueror by Richmal Crompton. Like William, Rycroft was a little boy with a dog called Jumble. And as
@monstroso says in his introduction, William is what every boy wants to be, a hero. As was Rycroft.
There came a point where we realised that Rycroft was not going to recover.
@GreatOrmondSt were amazing at taking us through that realisation. When Rycroft died, it was peacefully in our arms. We got the chance to tell him how much we loved him and how much he means to us.
It's hard to believe that we will never see him again. But in sixteen months, he gave us a lifetime's worth of happiness.
Right now, we really want to do what we can to support other families like ours, other children like Rycroft, through [three charities we chose]. Whatever you can give, whatever you can do to share, spread the word - thank you.
Andrew and Catherine set up a JustGiving fundraising page in memory of Rycroft:
Our beautiful baby boy Rycroft passed away aged just 16 months. He was a smiley, sociable and inspirational little boy who charmed everyone who met him. Rycroft suffered from Shwachman Diamond Syndrome (SDS), a rare genetic condition that affects multiple systems within the body and, in a quarter of cases, results in bone marrow failure. For a huge proportion of his short life he was cared for by the wonderful team on the children’s ward at Colchester General Hospital. In March 2023 he was admitted to Great Ormond Street Hospital for a bone marrow transplant – and although the transplant was initially successful, he passed away a few months later after contracting a subsequent infection. We are devastated by his loss and want to raise funds to help other families who may go through what we have been through, and to raise awareness of the incredible work of the medical professionals who cared for him. We have chosen three charities that do amazing work to help children like Rycroft survive and thrive. Great Ormond Street Hospital, Fox Ward Colchester Hospital, Children's Ward SDS UK All funds donated will be split evenly and will go to support these charities, who played such a huge role in giving Rycroft and us 16 wonderful months together, and give us hope that other families in a similar position will see their children grow up to live full and happy lives. Thank you, Andrew and Catherine
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