Canterbury Family Races to Adapt Home for Son,4,with Rare and Terminal Brain Disorder
CANTERBURY,England – A Canterbury family is urgently seeking suitable housing to accommodate their four-year-old son,Bertie Napier-Roberts,who has been diagnosed with BPAN (Beta-Propeller Protein Associated Neurodegeneration),a rare and terminal brain disorder. Bertie’s condition, characterized by progressive neurological decline, is compounded by epilepsy and increasing physical challenges, requiring adaptations their current home cannot provide. A charity football match is planned to raise funds for research and awareness of the devastating disease.
BPAN affects approximately one in every 100,000 births and currently has no cure. Bertie’s mother, Emilee, is navigating the complexities of managing his medication, which isn’t yet fully effective in controlling his seizures, while simultaneously battling the limitations of their current living situation. “The epilepsy is the scariest thing and something which we need to get under control as the medication still isn’t 100% right,” Emilee stated. As Bertie grows stronger and heavier, lifting him, particularly up the stairs, is becoming increasingly difficult.
The family initially hoped to build bedrooms at the bottom of their garden to provide accessible accommodation for Bertie and his brothers, but the local council denied the request due to Emilee not owning the property. She is now on the bidding register, awaiting a more suitable home.
To support Bertie’s care and research into BPAN, coaches at Sturry Football Club are organizing a charity football match at Marlowe Meadows in Fordwich on November 1 at 1pm. Funds raised will benefit Great Ormond Street Hospital (GOSH), where Bertie receives treatment.GOSH receives limited funding specifically for BPAN research, and Emilee hopes the match will not only raise vital funds but also increase awareness of the condition.
“GOSH doesn’t receive a lot of funding for BPAN and there’s only so much I can do personally,” Emilee explained. “That’s why I’m setting up the charity football match so we can also raise awareness of this condition. I’m really excited for it.”
Donations can be made online at https://www.gofundme.com/f/berties-charity-match-for-bpan?lang=en_GB&fbclid=IwY2xjawNJzBxleHRuA2FlbQIxMABicmlkETE3c2xLbGdHQVZmeXdzMTdFAR6_ZCphggpgawuDKJBRewpKPGrV_xbb9m4Io8QmJs_xmFQ3uVz285yd7VYogQ_aem_Do3DmN_li73Bnv0llIfOgg.
