Family’s bid to make memories with ‘beautiful, smiley’ schoolgirl who can’t leave home without oxygen

A group of fund-raisers are getting in the saddle to support the family of Ellissa Dodd, who has the rare condition FoxG1 syndrome.

The family of a ‘beautiful’ schoolgirl from Greater Manchester with a rare condition which means she needs oxygen 24 hours a day to survive say they just want to give her the best life possible.

Ellissa Dodd was born with FoxG1 syndrome, an extremely rare neuro-developmental condition caused by a spontaneous gene mutation which can affects brain function.

The six-year-old, who was diagnosed at just two weeks old and is now confined to a wheelchair, cannot see fully and suffers from epilepsy and recurrent chest infections, meaning that she needs oxygen throughout the day to breathe.

But the portable oxygen concentrator which Ellissa needs in order to simply leave her house, is not available on the NHS, meaning the family must fork out £3,500 for their own.

‘She is just beautiful and so smiley’

Liz Dodd, Ellissa’s mum, who has two other children Sophia, nine and Charlie, three, said: “Everyone just loves her because she is just beautiful and so smiley. We didn’t know she had the condition when I was pregnant.

Advertisement

“Everyone has the FoxG1 gene in their body but hers was deleted in the womb. We found out when she was two weeks old.

“We do everything we can to include her because she’s in our family. This year, after Covid, we tried to go on holiday for the first time since she’s been on the oxygen.

“It was then that we realised what a problem it was going to be.”

Ellissa Dodd

Travelling to Majorca, the family, who live on the outskirts of Astley, were forced to hire a portable oxygen machine for Ellissa to use, setting them back £500 a week.

Advertisement

On top of this, Liz said that rented machines are much higher than those that can be purchased, meaning it is more difficult to plan days out as a family.

“We have family and friends who live all over and we have to take numerous cylinders with us where we go,” added the mum-of-three.

“We just want her to have as normal a life as possible and make memories together as family. We are all very close and we try to make the most of the times when she is well.”

How rare is FoxG1 syndrome?

FoxG1 syndrome only affects around 600 people worldwide. Liz said that the oldest person that she knows of with the condition is 18 and that many sufferers succumb to the side effects of the condition such as epilepsy or an infection.

Advertisement

“There have been quite a few deaths already this year,” added the 39-year-old. “This is why we just want to give her the best life she can have.”

Fund-raisers getting on their bike to support Ellissa and her family

Hearing about the situation, members of Liz and her husband Jack’s gym, Mark Skeer’s in Walkden, decided to step in and help to pay for the equipment to help the family out.

On Sunday (10 July), gym member Scott Thompson, will lead a group of 16 cyclists on a 100km route from Manchester to Blackpool to raise funds for the Dodd family.

After buying the machine, any money left over will be used to fund sensory equipment for Ellissa.

Advertisement

“This equipment will make her life so much easier,” said Liz. “They have all done amazing, we feel so supported by everyone.

Ellissa Dodd has the rare condition FoxG1 syndrome

“I’m really grateful to Scott and to Mark Skeer’s gym, everyone has just wanted to help us out.”

The family have also been contacted by the Make a Wish charity, who are sending the family-of-five on the holiday of a lifetime to Disneyland Paris for Ellissa’s seventh birthday in August.

“People have just been so generous,” Liz added. “I’m so glad that we met them all.”

To donate to the fundraiser visit the GoFundMe page here.