A "happy-go-lucky" dad died aged just 31 after his migraines turned out to be a brain tumour. Lewis Davies from Bargoed was diagnosed with Pleomorphic xanthoastrocytoma (PXA) in 2016 and spent the rest of his life raising awareness of the rare disease to help others with it feel less alone.
Lewis, a doting dad to Sebastian, three, and Siffreya, one, became unwell when he experienced severe headaches and numbness in the left side of his body. His symptoms lasted a few months before he had a seizure and an MRI scan which revealed a tumour on his brain.
PXA has a relatively high survival rate and Lewis was able to live a generally happy life with his family for more than six years with the condition, so when he died on March 22 his fiancée Alica Williams, 38, and sister Chloe Davies, 28, told WalesOnline that his death came as a shock to everyone who knew him.
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Paying tribute to Lewis, they said: "He was very family orientated and the best father you could imagine. He was larger than life and always making friends. He would talk to anyone. He always wanted to share his story with anyone he bumped into. He was just a really happy-go-lucky guy. He meant the world to all of us and he was the glue of the family. He was the one who set up all the group chats. He really was the glue to the family.
"Before all this happened he was a mental health support worker and he always loved caring for people. He started Hope For Lewis on Facebook [to raise awareness] because he loved speaking to people about it and raising awareness. He reached lots of people who are going through [PXA] all across the world as well as similar conditions. It gave them hope and positivity and we've had lots of emails and messages of thanks since. He has really helped a lot of people."
Lewis was originally told it was likely he had an aggressive Glioblastoma brain tumour and that he would have a maximum of two years to live. They said Lewis felt determined to outlive his original prognosis and tried his best to stay positive. However further tests showed it was PXA, which is much rarer, but has better survival rates.
They said: "The first ever symptom he had was migraines. He complained about numbness in his left side which started in his left hand. He went to the doctors a few times and they thought it was just a migraine until he had a seizure. They found swelling on his brain and then an MRI revealed he had a tumour.
"At first they thought it might be a Glioblastoma which they said meant he had two years to live. He had a brain operation and they sent it off to be tested and it came back as a PXA. There isn't much known about that kind of tumour, but the survival rates were good - they called it a slow grower.
"Following his diagnosis he seemed very positive. When they originally said he had two years, he knew that was never a possibility. He was definitely going to beat two years and he did. He never really let it get to him and he didn't want it to bother us."
Alica and Chloe said Lewis regularly used the motto 'mind over matter' which he shared with his 2,000 Facebook followers to spread positivity. Since his death, many of his family members, friends and followers have changed their Facebook profile pictures to an image of the quote. Many have also had the saying tattooed on their skin in his memory, with half the funds being donated to a GoFundMe page. Money raised will go towards Lewis' funeral costs, with any extra raised to be donated to relevant charities. You can support the fundraiser here. So far more than £3,000 has been raised, for which the family said they are "eternally grateful".
Although Lewis kept everyone's spirits high with his positive attitude to life, Alicia and Chloe said he also faced challenges with his mental health. He lost full use of his left hand side, which meant he could no longer take part in the activities he used to love. However, Alicia and Chloe said he used Hope for Lewis to raise awareness of these struggles, which gave him some comfort.
They said: "He wanted to raise awareness of mental health too. His right side was absolutely fine, but his left side gave him an issue. He loved exercising, cycling, walking and doing other normal things. His left hand and foot stopped him doing that as well as other day-to day-things with his kids. He had a seizure in work so he had to quit work quite early on too. Being unable to do these things is what got him down more than anything else."
Alicia and Chloe said leading up to his death, Lewis' health deteriorated in just a matter of weeks after more tumours were discovered on his brain. They explained: "Two weeks before he died we had been down to see the consultant at Velindre [cancer centre] and she told us there were two new growths on his brain and that he would need to start chemotherapy. From there it all happened very quickly. He had chemotherapy for five days and then he started to go downhill. In a couple of weeks he was gone. It was heart breaking and we are still trying to process it. It doesn't feel real that he has gone."
When Lewis' family shared the sad news on his Facebook page, Alicia and Chloe said they were flooded with comments and messages of support. Although he had been ill for many years, his death still came as a massive shock to his followers.
Alicia and Chloe said: "They were shocked because he made us all believe he was invincible. We updated the Hope for Lewis Facebook page a couple of days before he passed to make people aware that he had deteriorated because he was always upbeat and wanted everyone to know everything. We made them aware that Lewis had been taken to hospital and that he only knew he had fluid on his brain. Everyone was telling him, 'come on Lew you can fight this'. When we broke the news that he had passed a couple of days later, the reaction was shock more than anything. We had a lot of people thanking him because he changed a lot of people's lives."
Alicia and Chloe said they have found out that Lewis' organs have gone on to save three other people's lives, which they said he would have found "amazing". They said they hope sharing Lewis' story will help continue his mission to inspire others to be "positive and good people" no matter what.
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