Our Buoy Hugo's Fund is a Special Named Fund at CCLG, raising funds for research into atypical teratoid rhabdoid tumour (ATRT).
As the proudest parents possible to Hugo Joseph Missen, born August 2015, we have set this fund up in memory of him after he lost the battle with such a horrific disease, that we know as cancer!
In 2016 Hugo started showing signs of illness at around eight months of age, firstly with a sudden tilted head which lasted a week or two. This soon corrected itself which meant there was no real concern from the paediatric physiotherapist once we were referred.
From this point Hugo was slowly becoming unsettled, he was more clingy than usual, his amazing appetite started to worsen and would only feed from myself. There was the odd sickness, which in time got a lot worse. Our main concern was Hugo’s balance, he’d been such a strong advanced little boy who was sitting up from the age of 4-5 months, but then at the age of 9-10 months we kept finding him fallen over whilst he was sat playing with his toys!
As a parent you know when things aren’t right, and with multiple visits to our local GP practice spread over two weeks, Hugo’s symptoms were put down to an ear infection (although he never had a temperature) and possible mini-vertigo.
On Friday 24 June after various antibiotics not responding and still no definite answers from the GP, we took Hugo to our local A&E department because we really needed an answer. We waited all day and that evening ended up with an answer that would never ever have crossed our minds......Hugo had a brain tumour!
Just before midnight we were blue-lighted to Noah’s Ark Children’s Hospital in Cardiff, where preparations took place for a six-hour operation to remove Hugo’s tumour first thing on the Monday morning.
As you can imagine our lives went from being on cloud nine with our beautiful baby boy to being terrifyingly turned upside down.
As a family, we spent two months living in hospital with Hugo as he recovered from a major operation. He was doing amazingly after everything he had been through, he was such a brave monkey.
During this time a sample of Hugo’s tumour was tested and unfortunately more bad news came our way, the tumour was cancerous, and even worse it was such a rare type of cancer, ATRT (atypical teratoid rhabdoid tumour).
At the beginning of this unexpected journey, Hugo’s age of 10 months worked in his favour, allowing the room for the growth of his tumour without causing as much damage as it potentially could have. But then in regards to treatment for this type of cancer, Hugo was too young. Radiotherapy was needed for the best outcome, but Hugo needed to be at least 20 months of age.
Instead, a chemotherapy plan was put into place to start the fight and hopefully buy us some time until Hugo became old enough for the recommended treated.
With many ups and downs and obstacles, Overall, Hugo responded well to his treatment and was more or less back to his cheeky self, we felt extremely positive as a family and started to believe we were getting somewhere.
December was approaching extremely quickly as we prepared for high dose chemotherapy (to mop up any underlying disease).
After a much needed break away in Tenby and more time spent at home together as a family, with Hugo being on top form over the past month, his health suddenly deteriorated very quickly in a variety of ways, including multiple seizures, leaving professionals confused as to what was happening. Just as quickly as Hugo originally fell ill, it all came tumbling back down on us.
The cancer had returned but in a different form, wrapping itself around Hugo’s brain stem, leaving him with no hope of surviving. On December 9th we had to let the most precious person in our lives go, and lay Hugo to rest.
No parent should ever have to do this, which is why it is so important that we do everything we can to try and stop this from happening......but we need your support!
Hugo brought joy to so many of our lives in such a short time, being diagnosed with cancer at such a young age broke our hearts. Losing the battle to cancer then shattered our lives forever!
We must work together to target these rare yet aggressive forms of cancer to ensure they stop taking the lives of those so deserving.
All money raised by Our Buoy Hugo's Fund will go towards research into ATRT, the form of cancer that children at such a young age have very little chance of surviving.
Jess and Joe
Hugo's mum and dad.
From this page, you can make a direct donation to Our Buoy Hugo's Fund, or open your own fundraising page to raise funds for Our Buoy Hugo's Fund.
For information about other ways to donate, including by monthly Direct Debit, visit our website >
You can also make a donation by text message.
Text CCLG 5 HUGO to 70300 to donate £5.