A mum decided to go ahead with a charity walk to raise awareness of her daughter's rare genetic disorder despite the sudden death of her own father less than a week before.

Anaïs Heghoyan-Thomas had organised the walk in Mill Hill Park for the May bank holiday Monday (May 6).

Her daughter, four-year-old Arev Thomas, has the developmental disorder Bain HNRNPH2, which has only 145 known cases in the whole world.

Ham & High: Arev Thomas, 4, has a rare genetic disorderArev Thomas, 4, has a rare genetic disorder (Image: Anaïs Heghoyan-Thomas)

The disorder often results in developmental delay, intellectual disability, and seizures.

Anaïs had organised the walk in the hope of raising money for US-based charity The Yellow Brick Road Project, whose mission is to fund research into the debilitating illness.

But the event was thrown into doubt after the sudden death of her father the week before.

The mum ultimately decided to go ahead with the walk, feeling her father would have been “disappointed” if she had cancelled it.

Anaïs explained: “Dad wanted to come on the walk as well.

“We managed even though it was pouring down. Everyone was with me, holding my hand.

“Arev was leading it, she was in her pram and we were all taking turns to push her.”

The mum paid tribute to all those who turned out to support her, as well as Arev’s paediatrician Dr Ella Rachamim, who works for the Royal Free NHS Trust.

Anaïs said: “I think the walk was wonderfully positive.

“I told everyone – they say it takes a village, and you are all my village, and I can’t do it without you.

“It was all my nearest and dearest, and doctors and professionals. It was very moving.”