Canterbury Family Races to Adapt Home โfor Son,4,with Rare and Terminal Brain Disorder
CANTERBURY,England – A Canterbury โfamily is urgently seeking suitable housing toโ accommodateโ their four-year-old son,Bertie Napier-Roberts,who has been diagnosed with BPAN (Beta-Propeller Protein Associated Neurodegeneration),aโ rareโข 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 โresearch and awareness of โthe devastatingโฃ disease.
BPAN affects approximately one in every 100,000 births andโ currently has no โคcure. Bertie’s mother, Emilee, is navigating theโฃ complexities of managing hisโ medication, which isn’t yet fully effective inโ controlling his โseizures, โฃwhile simultaneously battling the limitations ofโ their current livingโฃ situation. “The epilepsyโค is the scariest thing and something which we need to get โขunder control as โthe medicationโ still isn’t 100% right,”โ Emilee stated. As Bertie growsโ stronger โฃand heavier, lifting him, particularly up the stairs, is becoming increasingly difficult.
The family initially hoped to build โขbedrooms at the bottom of theirโ garden toโ provide accessible accommodation for โขBertie and his โbrothers, but the local council denied the request โdue to Emilee not owning the โคproperty. She is now on theโค bidding register, awaiting a more suitable home.
To support Bertie’s โฃcare and research into BPAN, coaches at Sturry Football Club are โฃorganizing a charity football matchโ at โขMarlowe โคMeadows in Fordwichโค onโข November 1 atโฃ 1pm. โFunds raisedโค will benefit Great Ormond Street Hospital (GOSH),โฃ where Bertie receives treatment.GOSH receives โขlimited funding specifically โfor BPAN research, and Emilee hopes the match will notโ only raise vitalโ fundsโ but also increase awareness of the condition.
“GOSH doesn’t receive a lot of funding for BPAN โand there’s onlyโฃ so much I can do โpersonally,” Emilee explained. “That’sโ why I’m โsetting up the charity football match so we can โalso raise awareness of this condition. I’m really excited โfor it.”
Donations can be made online atโ https://www.gofundme.com/f/berties-charity-match-for-bpan?lang=en_GB&fbclid=IwY2xjawNJzBxleHRuA2FlbQIxMABicmlkETE3c2xLbGdHQVZmeXdzMTdFAR6_ZCphggpgawuDKJBRewpKPGrV_xbb9m4Io8QmJs_xmFQ3uVz285yd7VYogQ_aem_Do3DmN_li73Bnv0llIfOgg.