About Us
This website is run by Rupert's parents, Dave & Jo, for them to share updates on fundraising in his name. Every day they just keep swimming, just as Rupert taught them to do.
Just Keep Swimming
Right from the beginning every night when we left Rupert in NICU we would tell him to just keep swimming. Some nights we left praying he’d make it through the night. It almost became compulsive, like we had to say it so that he would be okay.
The day we brought Rupert home from PICU to remove his life support, he had become so weak we weren’t sure if he would make the journey home. We said to the doctor that morning we would rather him be most comfortable and not put him through the journey if it wasn’t right. The doctor said Rupert will tell us when he’d had enough and he was more confident we should be able to get him home. Our little Ru kept swimming all the way home, through one last bath, some stories read by daddy and lots of cuddles. He kept swimming right until the very end 💙
This will always be our family motto now. All we have to do, is just keep swimming...
The Gift Of The Ladybug by Carole Mac
When we found out about this book written by Carole Mac, we instantly knew we needed to read it. We had never heard of mitochondrial disorders before we learnt of Rupert’s diagnosis. One of the cruelest parts was knowing his condition would be life limiting. Rupert’s was so severe, he was predicted to only live a matter of months. I remember saying to one of the consultants before we were discharged from hospital it felt like we were taking our baby home to die. They replied by saying we needed to see it as taking him home to live his life, however short that may be.
Reading this story helped us gain a different perspective on Rupert’s short, but magical life. He was a ladybird and the most perfect one at that 🐞💙
Remarkable Rupert
When Rupert was diagnosed we were told there was no treatment and our baby wouldn’t survive this cruel condition but the Evelina worked so hard to help relieve his symptoms. They told us there was a trial drug being used in Switzerland for a more well-known medical condition which could possibly provide Rupert with artificial ketones and therefore more energy to help support his extremely rare condition. The consultant made contact with the Swiss company and they agreed to send some to the Evelina for Rupert to trial. It was beyond scary at the time agreeing to give our month old baby something that we knew wasn’t a prescription drug and that we knew nothing about - it didn’t even have an official name. We had to make the decision to try and help him in any way we could.
This trial drug made huge improvements to Rupert, giving him relief from seizures, helping him to breathe independently, giving us time at home together and, we hope beyond anything, more comfort to him.
Evelina have since used this drug for other patients and their different conditions with success, too. They have now asked our permission to use Rupert’s data anonymously as part of a report to make this drug accessible in the UK as a prescription drug.
Of course we said yes, anything to help others and what a legacy to our incredible boy.
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