I do feel for Charlie Gard’s parents but I know I’ve just got to let my daughter go

seizures mean she and her family spend much of their time in and out of Tameside Hospital. On two occasions, at three and five years old, Bailey-Rose came close to passing away.

Chloe recalled: “Watching her, I had no regrets about the DNR notice.

“I just wanted her to know everything was okay. I had conversations with her in my head, telling her, ‘If you need to, you can go now’.”

The mum tries to avoid reading stories about other “mito-warriors” – children battling mitochondrial diseases – as she finds them harrowing.

But the worldwide attention on Charlie Gard’s case – Donald Trump and The Pope have offered support to the tot’s family – is impossible for Chloe to ignore.

She said: “I feel Charlie’s case is misinforming the public about mitochondrial disease. They do not understand that it’s an umbrella term for dozens of diseases and each case is different.

“MD didn’t get enough coverage in the first place and now, suddenly, people say ‘Oh there’s a cure for it now’. They don’t know what I have been through and assume that something can be done for Bailey-Rose and it can’t.

“I have lived and breathed this for five years, under expert advice, and I know there will never be a cure for my daughter in her lifetime. Even some of BaileyRose’s elderly relatives don’t quite understand and are getting hopes up.

“It is upsetting for me as a cure is what I would hope and wish for.

RESPECT

“Instead, I have already had to think about my child’s funeral and come to terms with the fact my other children will lose a sibling.”

Despite her own heartache Chloe has “nothing but respect” for the decision of Charlie’s parents to seek treatment – and has offered her support on Facebook. She added: “All I can give them is empathy. I know how they’re feeling, it’s hard and it’s scary. Your heart breaks. I have to go through a process of grieving while my daughter is still here and they are probably doing that for their son.”

When not in hospital, Bailey-Rose attends a special needs school – an experience Chloe wants her to have.

She added: “I don’t want people to think I’m not fighting for Bailey-Rose to live. I am. Every day we have with her is a blessing, she is a beautiful child.

“Like any parent, I just want the best for my child.”