Strong support for specialist equipment fundraiser in aid of Berwick girl Florence

Kayleigh Tait, from Berwick, has thanked all those who have donated so far to the fundraiser for vital specialist equipment in aid of her daughter Florence, who has FOXG1 syndrome. It is a severe neurodevelopmental genetic disorder and only hundreds in the UK have been diagnosed with this condition.

The total so far after just over a week is more than £2,500.

As the www.justgiving.com/crowdfunding/katie-mccoll page explains, Florence – called Flo by her loved ones – is ‘severely disabled, has Epilepsy, a Gastrostomy feeding tube, suffers with reflux and bowel issues and visual impairment. Her diagnosis also means that she has a movement disorder.’

Kayleigh said: “Although Flo has always had FOXG1 syndrome, she was only actually diagnosed earlier this year. She was previously diagnosed with severe Quadriplegic Cerebral Palsy – now we have answers and a reason for why she presents that way.

“As her condition is life-limiting, it’s about making the most of the time she has got.

“Quite a few people know about Flo because she attended a mainstream Sure Start (now family hub), including being part of a video praising the staff there, but in saying that we are still absolutely overwhelmed with the response to the Justgiving page so far.

"The donations and positive comments mean the absolute world – we've had quite a rough time lately, so this is just the pick-me-up we needed.

“Flo is the happiest person I have ever met. Despite the challenges she has to go through, there is always a smile on her face.

“She is our ray of sunshine.”

The first item that would be purchased is a specialist sculpted bean bag, which is not funded on the NHS, as a trial with the equipment has shown she will be safe and comfortable in it.

Kayleigh said: “It gives her the option to lounge, which she doesn’t have at the moment.

“We looked into charitable funding, but that process takes a long time and so Flo’s personal assistant started the Justgiving page.”

Replacement foam matting, special blankets for wheelchairs and specialist apps to help Florence continue with her learning out of school have also been identified.

She started at The Grove School in September. Kayleigh added that Florence’s nine-year-old brother Tommy “has been an absolute superstar in helping out with Flo”.