Mission to raise £30,000 for Maltby girl (11) with rare condition

Tammy and James Perry were devastated by the news daughter Emma had a brain tumour aged nine — and that she had genetic disorder von Hippel-Lindau (VHL).

Mum-of-five Tammy said it had taken three operations for the brain tumour to be removed and, as a result of further complications, Emma had to undergo a tracheotomy.

Two years on, Emma has to be fed through a tube and needs round-the-clock care. 

“Despite everything that’s happened to her, Emma always has a smile on her face,” said Tammy (40), of Devonshire Road, Maltby. 

For the past five months, Emma has slept on a hospital bed in the family’s living room, and her parents are determined to muster the cash for an extension so she can finally have her own downstairs bedroom and bathroom.

“Emma has been through so much and the current living situation is far from ideal as she has no privacy,” Tammy said.

“We’ve secured half the money to build the extension via a grant of £30,000, but we need to raise the rest ourselves.” 

Several fundraising initiatives have been launched, including pubs having collections, a bike ride to Scarborough by the Tickhill Velo Club and an Irish night in Doncaster. 

“Everyone has been so amazing helping us, a lot of people we don’t even know,” Tammy added. “We can’t thank everyone enough for their support and donations.”

VHL is a life-long genetic disorder which causes tumours to form in various parts of the body. 

The future is uncertain for Tammy, as well as her two other daughters Lilly (2) and Molly (4), who have also been diagnosed with VHL. 

Tammy said she had been none the wiser until Emma started to show symptoms when she was eight.\!q 

“I had absolutely no idea I had this condition and had passed it on to three of my children,” she added. “It is absolutely devastating.” 

Doctors have now found a tumour on Tammy’s spine, which is currently not increasing in size. They have told her it’s a waiting game until they know more, with regular scans planned.

Lilly and Molly are also due to have eye tests to check for any possible tumour growth, but will not start having MRI scans until they are eight. 

The family are nearing the £20,000 mark for Emma’s extension and are hoping the building works will begin as early as September. 

Visit www.justgiving.com/crowdfunding/tammy-perry to support Emma’s cause.