A BRAVE mum has spoken of the battle her daughter faces after being born with a rare incurable genetic disease which took the lives of two of her other children.

The heartbreak Mary O’Callaghan has endured over the past decade is hard to imagine, losing her son Gerry-Lee when he was just 11 months old and then facing the death of her 19-month-old daughter Precious-Marie.

Both were diagnosed with Microvillus Inclusion Disease (MVID) - an ultra-rare genetic disorder which affects the small intestine.

To add to her trauma, Mary has been told her daughter Bonnie-Rose, who was born in October last year, also has MVID, and is facing the devastating prospect that time with her baby may be limited.

Mary, 33, from Holme Wood, said the classical version - which her babies were born with - is the most aggressive form of the condition and her children are the only ones to be diagnosed with it in the UK.

Dr David Campbell, Consultant Paediatrician specialising in Gastroenterology at Sheffield Children’s Hospital, which cared for Gerry-Lee and Precious-Marie and has assisted in Bonnie-Rose’s case, said: “MVID is extremely rare with under 300 cases in Europe and less than a dozen cases in the UK. Exact numbers of cases are not known. The condition is hereditary and linked to a gene called MYO5B, which stops the cells in the small intestine from digesting nutrients, meaning fluid and salts leak into the gut.”

The tot, who is unable to feed naturally, has been through a difficult journey since birth and before Christmas fought against the odds to recover from meningitis and septicaemia after ten “dreadful” days. And although “rainbow baby” Bonnie-Rose has faced a gruelling journey, Mary has been by her side every step of the way. She said: “My heart breaks, my baby has fought since birth. I spend everyday with her unable to leave, I miss my home and children so much, but I have the most amazing family who have helped to enable me to stay at Bonnie-Rose’s side.

“I don’t leave her, I sleep at her bedside, I don’t leave the hospital - she’s with me all the time.

“I just want to spend what time we’ve got with her. We’re trying to create as many memories as we can.”

The devoted mum says she doesn’t know what the future holds.

Bonnie-Rose is currently being cared for at Leeds General Infirmary and has also been referred to a hospital in London, where her family will receive information about organ transplants.

But before she has to go to hospital again, Mary says they hope to spend time with her at home and take her on a family trip to make those all-important memories. Mary, who has six other children besides Bonnie-Rose, said: “I can’t wait to get out of hospital. I know she’s better at home. Building quality time with her siblings.

“The best place for her is at home, where she is being loved and treated as a normal baby.”

For Mary, her focus is now looking at other treatment options.

Her late daughter Precious-Marie had an organ transplant at Birmingham Children’s Hospital, but Mary wants to look beyond that. She said: “Bonnie-Rose is a rainbow baby. We’ve lost a child and then she’s come along.”

Bonnie-Rose’s family is now fundraising to help with her quality of life, transport to hospital, as well as any private treatment options which may help.

Money will also be donated to the children’s ward which is caring for Bonnie-Rose as well as further research and education around parenteral nutrition, which is how the brave tot has to be fed. Residents of Holme Wood are coming together in a show of solidarity with the family and will take part in a sponsored walk on February 24. It will begin at 11am at Holme Wood Library, Stirling Crescent, and all are welcome.

Visit www.justgiving.com/crowdfunding/mary-ocallaghan-1 to donate.