Mum of toddler with ultra-rare genetic disease praises paramedic who 'saved her life'

Bobbie-Rose with Brogan,10, left Maryanne, 3, Tommylee, 11 and Paddy, 7.
Bobbie-Rose with Brogan,10, left Maryanne, 3, Tommylee, 11 and Paddy, 7.

The mum of a toddler who is battling an ultra-rare and incurable genetic disease has praised a paramedic who saved the tot's life.

Mary O'Callaghan, 33, told how 18-month-year-old Bonnie-Rose started fitting in the early hours of Saturday morning.

Bonnie-Rose during the Easter weekend

Bonnie-Rose during the Easter weekend

She awoke to hear Bonnie-Rose - who is kept alive by an intravenous feed due to the small intestine disorder - screaming.

The toddler - who is thought to be the only known sufferer of Micro Villus Inclusion Disease ((MVID) in the UK - was found lying with her eyes open but unresponsive.

Desperate mum Mary, of Carlton-In-Lindrick - who has already lost two children aged 19 and 11 months to the same condition - phoned 999 immediately.

A paramedic arrived with four minutes as Bonnie-Rose started 'turning white' due to low blood sugar.

Bonnie-Rose in hospital.

Bonnie-Rose in hospital.

The paramedic - realising oxygen levels in the little fighter's brain were dangerously low after testing her blood sugar levels - gave her a glucagon injection.

This prevented a 'catastrophic' loss of oxygen which Mary says would have killed Bonnie-Rose or left her brain-damaged at best if she had survived.

Mary - who has six other children - and is fundraising to pay for treatment in America for Bonnie-Rose - said the quick-acting paramedic 'saved Bonnie's life'.

She said: "If he had not acted so quickly it would have been catastrophic - her brain would have closed down and if she survived she would have been brain-damaged.

In the ball - October 2018

In the ball - October 2018

"I'm so grateful but I didn't get his name with it being so manic.

"He was a lovely man and really calm - he just did his job - the ambulance service gets a lot of stick sometimes but I cannot fault him."

After being taken to Bassetlaw District General Hospital accident and emergency Bonnie-Rose was stabilised and monitored until she was able to return home with Mary later that morning.

MVID is thought to be extremely rare - only approximately 200 cases have been identified in children in Europe.

Mary began a fundraising campaign a year ago to pay for special treatment at the Center for Advanced Intestinal Rehabilitation in Boston, USA.

At present Bonnie-Rose gets all her nutrition through an intravenous feed which pumps it into her body through her veins - a technique known as total parenteral nutrition (TPN).

However she was shattered to be told by the NHS toddlers with the condition rarely survive into adulthood as the fats which are fed into the body through TPN cause liver damage.

Mary hopes a different treatment regime in the USA will Bonnie-Rose a better chance of survival.

She said: "In America they do it differently - TPN as a way of life - I've spoken with adults from abroad who are still living on TPN and it really opens your eyes."

Mary says the cost of treatment in America will be around £200,000.

To help fund Bonnie-Rose treatment visit https://www.justgiving.com/crowdfunding/mary-ocallaghan-1