“He’s a really humble, lovely guy” Ed Sheeran makes joyful 5-year-old’s day

Posted in Kids Health.

Ed Sheeran’s visiting our sunny shores, performing on an incredibly popular and record-breaking tour, and he’s taken some time to make one Ed-adoring five-year-old’s dreams come true.

Today Holley got to meet her favorite singer Ed Sheeran for a meet and greet, such a amazing experience for Holley. What a great humble guy x

Posted by Hope for Holley fighting Batten disease on Tuesday, 6 March 2018

“What a great, humble guy”

Over one million people bought tickets to this lovely gent’s Australian and New Zealand concert series, but it was obvious that a particular little girl really made an impression.

Holley Lavington has a rare genetic condition called Batten Disease and she and her mum got to meet Ed at his Adelaide concert on Wednesday night.

‘Today Holley got to meet her favorite singer Ed Sheeran for a meet and greet, such a amazing experience for Holley. What a great humble guy,” Holley’s mum Bettina wrote on Facebook. She shared some photos of Holley’s Ed Sheeran experience and they’re making us very emotional in the best kind of way.

“Her face just lit up”

Holley, who is from Peterborough, can thank her speech pathologist for arranging this special meet and greet. She sneakily contact Ed’s management and lined up this dream backstage experience.

Holley is apparently a whopping fan of the soon-to-be-wed superstar and when it dawned on her that he was standing right before he, she totally freaked out!

“She was so happy to see him … her eyesight is limited so she wasn’t sure who it was at first. But when she worked it out, her face just lit up,” Holley’s mum Bettina told the Herald Sun.

“We spoke about Holley and he asked about the disease, and also about how much she liked his music. He’s a really humble, lovely guy, very generous with his time.”

We just KNEW he’d be like that!

Ed also signed a t-shirt for Holley, scrawling “Holley, lovely to meet you! Love, Ed” #Love

The Batten battle

Holley was first diagnosed with Batten Disease in 2015, when it affected her eyesight, her movement and her speech. In January of last year, Holley lost the ability to walk, with the disease likely to progress in very debilitating ways.

Holley’s family are sharing their experience of Batten Disease via the Hope for Holley fighting Batten disease Facebook page, to raise awareness of this condition. Approximately 14,000 children worldwide have been diagnosed with Batten Disease.

You can donate to the Batten Disease Support and Research Foundation to help kids like Holley and fund research into this disease.

Batten Disease is named after a British paediatrician who first described it in 1903. It is one of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs) and usually manifests in childhood. Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children become totally disabled and eventually die. Source: battens.org.au

Posted by Hope for Holley fighting Batten disease on Wednesday, 7 March 2018


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