PARENTS whose world ‘collapsed beneath them’ when they lost their daughter suddenly to a genetic disease are starting to rebuild their lives.

Stuart and Kira Connor want to raise awareness after their three-year-old Grace died suddenly last month of Mitochondrial disease - a chronic illness that causes debilitating developmental and cognitive disabilities.

They then faced an agonising wait to find out if her five-month-old brother Elliot had inherited the same condition, with their young son receiving the all-clear just yesterday.

'Happy and healthy' Grace was thrust into a whirlwind of tests and treatment in March, initially at the Horton General Hospital before being moved to the John Radcliffe Hospital.

Her mum Kira Connor, 33, said the 'usually loud, demanding and slightly crazy' youngster started being sick one morning and by midday had developed small facial seizures in the form of an eye twitch where they would flick to the left repetitively.

Grace's symptoms baffled doctors, without any previous family history of Mitochondrial disease, and it wasn't until she was moved to the John Radcliffe the following day in which an MRI scan found the youngster had suffered a stroke.

Mrs Connor, from Little Bourton near Banbury, said: "Grace was such an outdoor kid who loved nothing more than being out with her daddy on the farm, out on the tractor and with the sheep.

"She was always a healthy little girl, the only thing I questioned was that she was a late walker.

"She didn’t start walking until 21 months and when she did get going she never really got flying."

The MRI scan ruled out factors such as a brain tumour which could be the cause of Grace's seizures and doctors stabilise the youngster enough to consider sending her home.

But just two weeks after falling ill, the three-year-old had another stroke.

Mrs Connor said: "The seizures returned with serious might, her eyes were now flicking to the right and she had also started flicking her head."

The youngster was put into a controlled coma and on a ventilator to stabilise her condition.

Mrs Connor said: "On April 20, four weeks to the day, the test results came back [positive for Mitochondrial disease]. At which point we were told there was nothing we could do.

"They were always very open and honest with us, it can’t be very nice for them. So we knew if the result came back positive we had kind of come to the end of the road.

"Our whole world collapsed beneath us."

Grace's condition was very advanced and whilst on the ventilator her seizures returned.

Mrs Connor and husband Stuart, 35, made the heart-breaking decision, with the advice from doctors, to take her off the ventilator.

The pair, despite knowing they would have just days left with their daughter, prayed she would get better.

Grace passed away on April 23, just a month after falling ill.

Mrs Connor said: "It is obviously still raw for us.

"Grace was so kind and we were lucky we didn’t know she had this disease, as it meant she could live a normal life.

"She loved everything she did and that for us was a luxury, there are some people like us that know from the get go.

"As a result she lived life like a normal child and would have done anything for anyone.

"As raw as it is for us we want to channel that into something more positive to keep her happiness going."

The couple had an agonising wait for Grace's younger brother's test results to find out if he also had the life-threatening condition.

But got the good news yesterday that his results were all clear.

Mitochondrial disease is a genetic condition, either inherited or a gene defect, that affects one in 4,000 people.

It is progressive and there is no cure.

Mrs Connor praised the efforts of the John Radcliffe team who she says had a suspicion it was mitochondrial disease when the youngster first went in. This came from the developmental delay Grace had when learning to walk.

Mrs Connor, an administrator for FIS Systems, said: "Whilst we are hurting in ways I never thought possible and we are probably still in some form of shock, we will be eternally grateful to all of the staff at the John Radcliffe Hospital in Oxford.

"They fought as hard as we did for my baby girl and she received the highest level of care right to the end.

"We want to raise as much money as we can in memory of our beautiful girl to aid research into this disease and hopefully one day they can find treatment or a cure."

Friends and family have rallied round to help fundraise for The Lily Foundation, which supports those affected by the disease, and already racked up £3,767.

Money donated the Foundation will help raise awareness and fund research into finding a cure.

To donate justgiving.com/campaigns/charity/lilyfoundation/teamgrace