Family’s joy as £30,000 appeal to build a bedroom for daughter with rare condition hits target

By Chloe West | 27/09/2019

Family’s joy as £30,000 appeal to build a bedroom for daughter with rare condition hits target

A GIRL forced to sleep in the family living room after being diagnosed with a rare condition that needs round-the-clock care could have a specially-designed bedroom of her own by Christmas.

The family of 11-year-old Emma Perry, who has the genetic disorder Von Hippel-Lindau (VHL), said they were “relieved and thankful” after well-wishers helped them reach the total needed to build an extension at their Maltby home with a dedicated bathroom and room for medical equipment.

Just 30 weeks since their fundraising appeal was launched in January, mum and dad of five Tammy and James Perry said they were delighted to have raised the £30,000 needed on top of a £30,000 grant to fund the extension, which they hope will be finished within three months.

“Emma is so excited, so can’t wait,” Tammy said. “It would be the ultimate gift if we could get her in there for Christmas - she’s already been talking about wanting a tree and fairy lights in her room.”

Emma, who had surgery for a brain tumour two years ago, was diagnosed in the same year with VHL, which causes tumours to form in various parts of the body.

She needs constant care after suffering complications following the tumour removal operation.

To ensure nurses could look after Emma, who had a tracheoctomy two years ago and now needs to be fed through a tube, the family, of Devonshire Road, Maltby, had no alternative but to have a hospital bed and medical equipment set up for her in their living room. 

Tammy said the current living situation was far from ideal and gave Emma no privacy. 

They planned to build an extension for her to have a downstairs bedroom and bathroom and managed to secure £30,000 via a council grant but were left to raise the same amount themselves.

The Perrys have been supported by a series of fundraising events, including a £7,000 bike ride by Tickhill Velo Club, £1,200 from a Yorkshire Three Peaks Challenge by Joanne Hellewell, whose daughter went to the same school as Emma, as well as a casino night by Maltby Lions and other smaller events.  

“We are so happy and thankful to see a digger at the side of the house and know the work is finally beginning this week,” said Tammy (40, pictured above with Emma), who has also been diagnosed with VHL, alongside her two other daughters, Lilly (2) and Molly (4). 

“It’s such a relief and a joy to know people in our community helped us reach this total - it was never going to be an option to fail and we cannot thank everyone enough for their amazing support. It means the world to us.”

The future is uncertain for Tammy and her three daughters and it’s unknown how their condition will progress, but all four will undergo regular scans.


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