A campaign to find effective treatments for Duchenne muscular dystrophy has been backed by Natasha Asghar MS.
Family members of four-year-old Elliot Vers, who has Duchenne, have already helped raise more than £27,000 for Duchenne UK, a charity fighting to end the condition.
Natasha Asghar MS, who represents South East Wales, met with Elliot and his mum Lucy in Newport this week.
They talked about the condition and potential trials, but because Wales doesn’t have any trials Elliot will have to go to England.
Elliot’s mum told Natasha that the life expectancy of someone living in Wales with Duchenne was eight years less than Newcastle, where trials are being held.
Natasha offered to do all she can to get Elliot on a treatment trial by writing to the hospitals running them – one in Newcastle and one in London.
Twenty-four hours after their meeting Elliot’s Mother informed her that Elliot had been offered a space on the trial in Newcastle.
Natasha Asghar MS:
“It was a pleasure to meet Elliot, who is the sweetest little boy, and his mum Lucy who is constantly campaigning to get her son the treatment he needs and is a true inspiration.
“I must admit that I didn’t know a great deal about Duchenne until meeting them both, but after listening to Elliot’s story I am determined to do all I can to help him and others who have the condition.
“It shocking that Wales doesn’t have the experts or clinical trials to help people with Duchenne and it is something I will be raising in the Senedd going forward, as we should have adequate healthcare provisions in place for those who require treatment and medical support.
“However, I am absolutely delighted that Elliot has secured a spot on a trial in Newcastle. As a huge believer in working together with the UK government to achieve a positive outcome for the people of Wales, this is a great example of cross border co-operation between a range of health partners and am looking forward to hearing about and seeing the progress he makes.
“I know times are tough at the moment, but I would encourage anyone with a spare few pounds to consider donating to Elliot’s JustGiving page to help end Duchenne.”
Elliot’s JustGiving page can be found here: https://www.justgiving.com/campaign/elliotsendeavours
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AS o blaid ymgyrch bachgen ifanc i roi diwedd ar Duchenne
Mae Natasha Asghar AS wedi rhoi ei cefnogaeth i ymgyrch i ddod o hyd i driniaethau effeithiol ar gyfer nychdod cyhyrol Duchenne.
Mae aelodau teulu Elliot Vers, sy’n bedair oed ac sydd â Duchenne, eisoes wedi codi mwy na £27,000 i Duchenne UK, elusen sy’n brwydro i roi diwedd ar y cyflwr.
Cafodd Natasha Asghar AS, sy’n cynrychioli Dwyrain De Cymru, gyfarfod Elliot a’i fam Lucy yng Nghasnewydd yr wythnos hon.
Cawsant gyfle i drafod y cyflwr a threialon posibl, ond gan nad oes unrhyw dreialon yng Nghymru bydd yn rhaid i Elliot fynd i Loegr.
Dywedodd mam Elliot wrth Natasha fod disgwyliad oes rhywun yng Nghymru sy’n byw gyda Duchenne wyth mlynedd yn llai nag yn Newcastle, lle mae’r treialon hyn yn cael eu cynnig.
Cynigiodd Natasha wneud popeth o fewn ei gallu i sicrhau triniaeth dreial i Elliot drwy ysgrifennu at yr ysbytai sy’n eu cynnal – un yn Newcastle ac un yn Llundain.
Bedair awr ar hugain ar ôl eu cyfarfod dywedodd mam Elliot wrthi fod Elliot wedi cael cynnig lle ar y treial yn Newcastle.
Natasha Asghar AS:
“Roedd hi’n bleser cyfarfod Elliot, sy’n fachgen bach mor annwyl, a’i fam Lucy sy’n ymgyrchu mor galed i gael y driniaeth sydd ei hangen ar ei mab ac sy’n ysbrydoliaeth i bawb.
“Mae’n rhaid i mi gyfaddef nad oeddwn i’n gwybod llawer am Duchenne tan i mi gyfarfod y ddau, ond ar ôl clywed hanes Elliot rwy’n benderfynol o wneud popeth o fewn fy ngallu i’w helpu ef ac eraill sydd â’r cyflwr.
“Mae’n gywilyddus nad oes arbenigwyr na threialon clinigol yma yng Nghymru i helpu pobl sydd â Duchenne ac mae’n rhywbeth y byddaf yn ei grybwyll yn y Senedd yn y dyfodol. Dylid bod darpariaethau gofal iechyd digonol ar waith i’r rhai sydd angen triniaeth a chymorth meddygol.
“Fodd bynnag, rwyf ar ben fy nigon bod Elliot wedi cael lle ar dreial yn Newcastle. Rwy’n credu’n gryf dros gydweithio â llywodraeth y DU i sicrhau canlyniadau positif i bobl Cymru, a dyma enghraifft wych o gydweithredu trawsffiniol rhwng partneriaid iechyd amrywiol. Rwy’n edrych ymlaen at glywed am y cynnydd y mae’n ei wneud a chael ei weld gyda fy llygaid fy hun.
“Rwy’n gwybod bod pethau’n galed i bawb ar hyn o bryd, ond byddwn yn annog unrhyw un sydd â cheiniog neu ddwy i sbario i ystyried rhoi i dudalen JustGiving Elliot er mwyn helpu i roi diwedd ar Duchenne.”
Dyma dudalen JustGiving Elliot: https://www.justgiving.com/campaign/elliotsendeavours
