WATCH: Parents vow to continue fighting gene condition after death of baby daughter

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A MOTHER and father who tragically lost their daughter to a rare genetic illness are hoping to inspire people to get tested for the disease.

Lorna-May Anslow and her partner Connor Molineux’s daughter Scarlett died on August 26 at just 16 weeks old.

Lorna-May Anslow and  Connor Molineux with a picture of at their daughter, Scarlett at home in Havant     'Picture: Habibur Rahman

Lorna-May Anslow and Connor Molineux with a picture of at their daughter, Scarlett at home in Havant 'Picture: Habibur Rahman

Scarlett suffered from the gene mutation SCN2A, which causes neurodevelopmental diseases, and can cause the person to have a number of seizures throughout the day.

The damage caused from the illness is what limited Scarlett’s life, but the Havant couple are looking to not only give back to the nursing staff who looked after her and to cover the funeral costs, but also raise awareness of the illness itself.

To do this, they are hosting a fundraising event on November 26 at Park Community School in Middle Park Way, Leigh Park.

Lorna-May Anslow said: ‘Scarlett was having up to 50 seizures each day, which caused her to be severely brain damaged.

‘She couldn’t breathe properly by herself and was on a ventilator at Southampton General Hospital.

‘The staff at the paediatric intensive care unit at the hospital tried so hard and did everything they could for Scarlett.

‘We could never thank them enough for what they did, so this will be our way of saying thank you to them.’

The family are also hoping to raise more awareness of SCN2A – saying that it is not something many people know about.

Lorna-May said: ‘Apparently this gene is quite common, but people just aren’t aware that they can be carrying it.

‘We didn’t know about it ourselves, but it was life-changing to find out about it.

‘If we can encourage people to get tested and it helps to save a life, then that would be great.’

The couple say that the fundraiser, which will be running from 11am to 2pm on November 26, will be a fun day for all the family.

Lorna-May said: ‘We’re going to have sweets, Christmas gifts and jewellery all on sale.

‘There will also be a bouncy castle and some games for the children to play outside.

‘I’d like to think it would be the sort of event that Scarlett would have enjoyed when she grew up.’