A mum-of-nine has kick-started a crowdfunding appeal to help her poorly daughter after claiming she is the only baby in Britain to be fighting an ultra-rare disease.
Mary O’Callaghan, 33, is preparing a crowd funding campaign for her 16-week old daughter Bonnie-Rose who was born with Microvillus inclusion disease (MVID).
The genetic disease is debilitating for the tiny tot who is currently taking a special feed – but Mary was to give her daughter “the best quality of life possible”.
Mary’s has had two previous pregnancies which ended in heartbreak after both babies lost their battles with the same genetic disease – which causes small intestine failure.
MVID is thought to be extremely rare with only approximately 200 cases have been identified in children in Europe.
For three of Mary’s children to be born with the disease has over 1,000,000,000-to-one odds.
Mary, who is originally from Worksop, Notts., said: “It is so rare doctors have come over from Belgium for tests because it is such a rare disease.”
Bonnie-rose was born with the genetic disorder on Friday, October 13 last year.
Two of her other nine children Gerry-Lee died just under a year old in 2008 after the MVID in his DNA took six months to diagnose.
Mary gave birth to two healthy children after Gerry-Lee’s death, but her eighth child Precious-Marie died in 2015 after also being born with the genetic mutation.
Mary is spending every waking hour at Leeds Children’s Hospital with Bonnie-Rose.
However, she hopes that she can soon take Bonnie-Rose home to her grandparent’s address in Bradford, West Yorks., to start home-care treatment.
Mary said: “I spend everyday with Bonnie-Rose because I unable to leave – it is heartbreaking seeing her like this.
“I am very overwhelmed by the support and it is lovely, but I just want to spend time with Bonnie-Rose for little time I have left with her.
“I don’t know what the future holds – all I can do is make every day count.”
She added: “I miss my home and children so much, but i have the most amazing family who have helped me and enabled me to stay at Bonnie-Rose’s side.
Bonnie-Rose is currently being kept alive by artificial feeding and will rely on the type of feeding for the rest of her life.
The youngster is unable to feed naturally and has been through the wars after battling the condition since birth.
Before Christmas, Bonnie-Rose also went on to develop Meningitis C with septicaemia – but thankfully recovered after “ten dreadful days”.
Mary, who used to run a community centre, is now preparing to travel with Bonnie-Rose to see specialists at London’s King College hospital.
She hopes that medical experts and doctors can come up with a long-term solution for the tot.
Mary said: “We are looking into some oncology treatment which has never been used on babies.
“We hope to spend a few days or even weeks at home before Bonnie-Rose travels to London.”
After kick-starting a crowdfunding campaign for her daughter, Mary says any money left over will go to helping the research into Total Parenteral Nutrition (TPN) feeding.
She added: “The funding appeal, which was set up by my sister, will hopefully allow the family to go on a holiday – but due to Bonnie-Rose’s condition this might not happen.”
To donate to Mary’s Just Giving Page at: https://www.justgiving.com/crowdfunding/mary-ocallaghan-1
Leave a Reply