Cancer survivor mother devastated after being told her three daughters all need to have chemotherapy

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A mother who survived cancer three times now faces another heartbreaking battle after three of her five children were diagnosed with a rare genetic condition and told they need chemotherapy.

Lesley Owens, 43, has fought squamous cell carcinoma three times, had her womb removed and now requires a colostomy and stoma bag.

But now she faces the daunting task of managing the treatment of her three daughters – Sinead, 20, Caitlyn, 18, and 16-year-old Rhiann – after they were diagnosed with IRF8 deficiency.

The condition, caused by a gene mutation, affects the immune system and makes it incredibly hard for a person’s body to fight off common viruses.

Patients are regularly given immune cells from healthy donors to help fight viruses, as well as medications such as steroids to reduce inflammation.

As part of the treatment, all three will need to undergo chemotherapy, while Rhiann has already had an ovary removed and a bone marrow transplant. 

Tyler Heyworth, who is the only one of Lesley’s daughters not to have been diagnosed with the condition, believes the family is only the second in the world to receive a triple diagnosis of IRF8 gene deficiency.

Tyler said: ‘For years, my mum was taking my sisters to the doctors because they were constantly poorly. They would have what seemed like everyday illnesses – things like cold sores, flu-like illnesses and recurring problems with their ears. 

Pictured left to right: Caitlyn, 18, Sinead, 20, mother Lesley, 43, Rhiann, 16 and Riley, 13

Pictured left to right: Caitlyn, 18, Sinead, 20, mother Lesley, 43, Rhiann, 16 and Riley, 13

Mother-of-five Lesley Owens (pictured) has fought squamous cell carcinoma three times. Three of her four daughters have undergone chemotherapy to fight a rare genetic condition

Mother-of-five Lesley Owens (pictured) has fought squamous cell carcinoma three times. Three of her four daughters have undergone chemotherapy to fight a rare genetic condition

Tyler Heyworth is the only one of Lesley's daughters not diagnosed with the extremely rare condition IRF8 gene deficiency. The condition affects the immune system

Tyler Heyworth is the only one of Lesley’s daughters not diagnosed with the extremely rare condition IRF8 gene deficiency. The condition affects the immune system

Caitlyn, 18, and her mother Lesley are pictured

Caitlyn, 18, and her mother Lesley are pictured

‘But because nobody knew what was actually causing it, my mum was going back to the doctors time and time again and felt like she was being fobbed off. 

‘She knew there was something seriously wrong with her children. She knew this wasn’t just them catching normal illnesses all the time. My youngest sister has already been through things that no 16-year-old should ever have to experience. 

‘She’s had chemotherapy, she’s had an ovary removed, she’s had a bone marrow transplant and she’s lost her hair because of her treatment.

‘She’s spent so much of her childhood in hospitals and has missed out on things that should have been some of her happiest memories. She even missed her prom.’

In another cruel blow, Tyler said her sister Sinead has also been diagnosed with vulva cancer. All three have lost their hair during chemotherapy. 

She said her mother has somehow managed to hold the family together while juggling her own ill health, constant hospital appointments and treatments, running a household and looking after their 13-year-old brother Riley. 

Tyler said: ‘As their sister, I’ve felt completely helpless. I can’t take away the chemotherapy. I can’t take away the pain. I can’t stop them having to go into hospital.

‘But despite everything, my sisters are incredibly strong. And my mum is the strongest person I know. We’ve been through things I never imagined we’d have to face, and it’s been heartbreaking. But we’re still here. We’re still fighting. 

In another cruel blow, Sinead, 20, has also been diagnosed with vulva cancer

In another cruel blow, Sinead, 20, has also been diagnosed with vulva cancer

Rhiann, 16, has undergone chemotherapy and has already had an ovary removed

Rhiann, 16, has undergone chemotherapy and has already had an ovary removed

The rare condition affects the immune system and makes it incredibly hard for a person's body to fight off common viruses (Caityn Heyworth, 18, is pictured)

The rare condition affects the immune system and makes it incredibly hard for a person’s body to fight off common viruses (Caityn Heyworth, 18, is pictured)

‘And I’m incredibly proud of my sisters and my mum.’

Tyler has started a GoFundMe campaign to raise funds for everyday costs so her sisters can focus on getting through their treatment. 

It has so far reached over £4,500 of its £5,000 goal. The family are especially grateful to Sharna Kennedy, who helped raise £2,200 through her community. 

Tyler hopes raising awareness of IRF8 gene deficiency could help another family who may be going through something similar. 

She said: ‘I think people hear the words ‘rare disease’ and don’t realise what that actually means for a family. It means years of unanswered questions. It means hospital appointments, chemotherapy, operations and transplants. 

‘It means watching your sisters lose their hair and miss out on their childhood and teenage years. And it means a mum who is already incredibly unwell herself still getting up every day and fighting for her children.’




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