Bolton: Brave four-year-old girl lucky to be alive thanks to mum

Ivy Reed’s mum, Pippa Reed, had just finished settling her for bed and feeding her, when she heard an unusual 'clicking' noise.

After rushing upstairs, Pippa realised that Ivy was having a full-on seizure.

Before reaching Blackburn Hospital – where she regularly attends – Ivy’s heart stopped, and she was given chest compressions and CPR.

Dad Carl said: “It carried on in the hospital, and she couldn’t breathe for herself and was put in the high dependency unit for four days.

“Because of her condition she is in hospital quite a lot when she gets a little bug or a cold.

“At the time she had a chest infection.

“It’s a bit of a routine, but when there are 15 or 20 doctors around, no-one wants to see that.

“She could have seizures at any minute, which does make us a bit nervous.

“We haven’t slept since it happened two weeks ago.”

Brave Ivy continuing to find strength

Ivy was diagnosed with non-verbal autism, and a rare metabolic disorder – known as Propionic acidemia – at just two weeks old.

Both her parents are carriers of the condition which affects her liver.

It is so rare that only four or five children are known to have the life-long condition.

Carl added: “She has one of the most serious rare types.

"We talk about it a bit and the future.

“But we just keep it at the back of our mind and take each day as it comes.

“She comes to hospital so much, and it’s hard for us to go out for the day because we have to take equipment and an emergency drink with us.

“It does affect us, but Ivy is our extra special child.

“It’s scary to think that it could be an emergency if she becomes unwell.”

Not a lot of adults usually have this condition, and not a lot of children tend to reach adulthood.

It affects her development and mobility, although she can walk.

This is the second seizure Ivy has had since she was born, and both times her heart stopped, and she wasn’t breathing.

Carl added: “We have agreed to be part of a study in America looking at gene therapy.

“She had her first seizure and went into cardiac arrest at 11-months-old and was put on life support during her first Christmas and new year’s.

“We had to raise money for a defibrillator and an Oxygen monitor after the first seizure, and we monitor her when she becomes ill.

"They said that she could spend the majority of her childhood in hospital.

"One of the times I was in hospital on my knees worrying and praying that she would live.

"Now we can celebrate that she is here."

Pippa has had to give up her job to become a fulltime carer for Ivy.

The metabolic disorder means that Ivy’s body can’t metabolise and break down the protein in food, and she has high levels of ammonia in her blood, which affects her brain development.

Brave Ivy continuing to find strength

It can be maintained with medication and special treatment, although there is still uncertainty ahead.

Ivy is currently being fed through a tube every three to four hours and is on the waiting list for a liver transplant.

Carl added: “She could eat if she wanted to, but children with this condition tend to not want to eat food.

“So this is all about keeping her metabolism balanced.

"There isn't a cure for the condition.

“But the liver transplant could mean she isn’t in hospital as much, as well as helping with the high levels of ammonia, and prolong her life.

“All this can also hopefully relieve the added stress.”

Julie Robinson - who runs Eagley School House Nursery – where Ivy attends – decided to set up a GoFundMe fundraiser after hearing about the seizure from Carl.

She said: “The family have gone through a lot with Ivy, and I thought ‘I have to do something’.

Brave Ivy continuing to find strength

“Pippa told me that she wouldn’t be here if she didn’t hear the noise.

“The money that has been raised now will help buy the equipment which goes on Ivy’s wrist.

“This can then monitor her body when it goes into a seizure, alerting the hospital.”

It was thanks to a generous donation that Julie was able to reach the desired target, but the family are keen for any donations which can help support the family.

Ivy may need sensory items during her time at home, or entertainment at hospital visits, or future equipment.

Carl and Pippa will be seeing a specialist this Friday to find out more about the next steps.