A hospital sunshine fund set up and named after a Brecon boy who was the first child in the UK to be saved by a new ECMO machine, the first of its type in the UK, has raised over £15,500 for the unit that saved him.

Now 4 years old, Freddie Julian contracted several viruses including Slapped Cheek Syndrome and Pneumonia, which had attacked his heart leaving him in complete heart block, in June of 2024 when he was just 3 years old.

After being urgently transported by the Wales and West Acute Transport for Children Service (WATCh) Team from Prince Charles Hospital in Merthyr to the Paediatric Intensive Care Unit (PICU) at Bristol Royal Hospital for Children, Freddie underwent urgent surgery to place a pacing wire into his heart to ensure it kept beating. Unfortunately, after a few days Freddie’s body was continuing to fail as his heart was being attacked by the viruses and it could not get any oxygenated blood to his vital organs, he was hooked up to the brand new ECMO machine in PICU, which the hospital had just taken delivery of, as a last chance life-support. ECMO is only used for the very sickest cardiac patients, where other forms of life-support are failing.

After five days receiving ECMO support, doctors believed Freddie’s heart had experienced sufficient rest, and they reintroduced the blood in stages back into his heart. Freddie’s blood vessels were reconstructed and Freddie was successfully taken off ECMO but kept on life support for a further period whilst his body fought to continue to get better.

After a few weeks in PICU in Bristol, Freddie was strong enough to be successfully taken off life support and transferred to the High Dependency Unit (HDU) in Bristol Royal Hospital for Children. It was sadly evident at this point to Freddie’s parents Vickie and Steven, and to the medical staff in possession of his brain scans, that Freddie had sustained a significant global hypoxic brain injury when he was so sick, as his heart could not get enough oxygenated blood to his brain. Soon after, Freddie was transported to Noah’s Ark Children’s Hospital in Cardiff to carry out his recovery and neuro-rehabilitation, to be closer to home, and especially his big sister Millie.

Freddie is now back home in Brecon, recovering well and making progress each day. Vickie, Freddie’s Mum said: “Freddie was like a new-born baby when he came off life-support, he couldn’t even lift his arms and he had no head control. Through intensive neuro-rehabilitation in hospital and now in the community, Freddie has relearnt to sit, stand, walk, eat and drink, but sadly he has still lost his beautiful little voice.

“We are working every day for Freddie to regain the functions he has lost through his brain injury and encouraging his brain to make new connections around the damage, however the progress we see him make every day gives us so much hope. We are just so lucky that Freddie’s life was saved by the incredible and selfless medical teams at Bristol Royal Hospital for Children, we honestly owe them everything”.

To give back to those who saved him, Freddie’s family decided to launch Freddie’s Sunshine Fund at the Wallace and Gromit Grand Appeal Hospital Charity at Bristol Royal Hospital for Children.

With huge fundraising efforts spearheaded by Freddie’s parents Vickie and Steven, the fund has now raised over £15,500.

“I can’t believe the amount raised so far,” said Freddie’s Mum, Vickie. “The hospital charity are just so appreciative, and we are just so grateful we can give something back. For a family in a small community to raise that much in such a short space of time is amazing. It’s helped already by sending some nurses on ECMO training in Italy, and they were so grateful as the NHS nor the hospital charity wouldn’t have funded it normally, and the nurses would have had to fund it themselves.

“Since Freddie has been home, he has been coming on leaps and bounds. Although he suffered a significant brain injury when he was so poorly, he’s now back in preschool in a mainstream setting, five hours a day, which is incredible given he was only managing 30 minutes a day when he began settling back in.

“We’ve held Freddie back a year in preschool to give him a chance to be able to re-learn the functions he sadly lost last year. Powys County Council had to go to the Welsh Ministers to get consent to hold him back, which they agreed to on the last day of term in the Summer., What also has benefitted Freddie massively is his one-to-one assistant in pre-school. He’s come on so much since he’s been home and back in pre-school, and we are so proud of him and grateful for the support he has access to.”

The money in Freddie’s Sunshine Fund has been raised through a series of fundraising events by Freddie’s family and friends. Freddie’s Aunty has ran the Newport Marathon, a Charity Ball was organised by Team Freddie, headed up by Freddie’s Nannie, and was kindly hosted at Derring Lines, with sponsorship from PAR Homes, and Big Green Self Storage to provide wine and also a table at the event for nurses from PICU at Bristol to be able to attend. The local band Northern Ruins donated their services free of charge on the night, as well as a local media company Leyshon Studios who created memories of the evening.

Raffle and auction prizes were also kindly donated by local businesses friends and the community, with the single event raising a staggering £7,000.

£1,300 also was raised by Freddie’s pre-school as the children there, along with his big sister Millie’s class in the school, as they successfully completed a Wheelathon given Freddie’s love for balance-biking before his brain injury. The most recent fundraiser to date was a charity football match and fate, organised by Freddie’s parents and family friends where the proceeds were split between Freddie’s Sunshine Fund and Ty Hafan Childen’s Hospice hosted at Brecon Town Football Pitch, kindly donated by Brecon Town Juniors FC.

Vickie said: “The fundraising is not stopping here, and we hope that Freddie’s Sunshine Fund will continue to grow and grow, to help somewhat towards saving many other young lives in PICU, just like Freddie’s was.

“Millie’s class in school is even organising an Art Exhibition where half the proceeds are going to Freddie’s Sunshine Fund. Millie came up with the idea of the proceeds going to charity and asked her teacher. We are so proud of her zest, at the tender age of 6, in her ideas to fundraise towards Freddie’s Sunshine Fund and her thoughtfulness to give something back to the Unit that saved her little brother.”

Freddie’s story has been heard around the world by The Jingle Jam, who are the world’s largest gaming charity that are providing funds to Bristol Royal Hospital for Children in their most recent major development of the Jingle Jam Patient Hotel (the first in the county); Bristol Royal Hospital for Children have used Freddie’s story for the Wallace & Gromit’s Grand Appeal, and Freddie was asked to be a special guest at the WATCh Team’s 1st anniversary of their M4 Base opening, where big sister Millie blew out the candles on the cake in the Spring along with the local MP and CEO of the Hospital Trusts.

The charity at Noah’s Ark Children’s Hospital for Wales, where Freddie underwent his neuro-rehabilitation, used Freddie’s story for the sparkle appeal last year for Christmas, and raised over an incredible £135,000 during the fundraising campaign.

“We were overwhelmed for Freddie to be asked to be the face of the sparkle campaign 2024 with his incredible medical story being used to raise funds for Noah’s Ark,” said Vickie. “A target of £122,000 was set to be raised within a week, which was the most ambitious target the hospital charity had ever set for a single campaign. This amount was raised in less than 48 hours, and throughout the week the total just kept going up and up to over £135,000!

“As a thank you for letting the hospital charity use Freddie’s story, we were asked as a family to turn on the Christmas lights in Noah’s Ark Children’s Hospital for Wales, as well as being flag bearers at their Superhero 5k this Summer both of which have been huge honours.

“It was such a terrible situation last year, at least some good can come out of it by helping others.

“Freddie’s Sunshine Fund is giving something back to a Unit that worked so hard to save Freddie and continues to work hard to save so many children 24 hours a day 7 days a week.

“It feels like a little something we could do to give something back. It’s the least we could do for saving Freddie’s life and if the incredible medical teams in PICU didn’t put him onto that ECMO machine, there is no doubt in my mind that he wouldn’t be here.

“We’ve agreed with the hospital charity that Freddie’s Sunshine Fund is earmarked specifically for the paediatric intensive care unit and for the ECMO provided there. A lot of admin fees are taken out of most charity donations, but not out of Freddie’s Sunshine Fund – where every penny goes directly to PICU and the ECMO provided there, staff training and equipment in the Unit exclusively.

“I honestly can’t thank everyone enough who has donated, sponsored events, taken part at events, helped at events, and undertaken fundraisers for Freddie’s Sunshine Fund. It is down to everyone’s kindness, generosity and support that we have been able to raise such an incredible amount already, and I know the hospital charity and PICU are as grateful as we are.”