Plea For Signatures

A LEIGH mother is making a heartfelt plea for signatures on a petition to help her daughter, who is suffering from a rare genetic condition that reduces her mobility.
Karly Johnson is urging people to sign a parliamentary petition urging the NHS to fund the drug omaveloxolone, after it was approved for use in Ireland.
The medication is used to treat Friedreich’s Ataxia, which her daughter Brogan was diagnosed with in 2024.
Friedreich’s ataxia is a rare, inherited genetic disorder that causes damage to the nervous system, leading to poor muscle coordination, balance problems, and movement difficulties.
The progressive condition has already lost Brogan around 80 per cent of her mobility.
For Ms Johnson, the recent approval of omaveloxolone has offered both a ray of hope, but also caused frustration that patients in the UK cannot yet benefit from it.
With her petition needing to reach 100,000 signatures by September 24 for it to be considered for debate in Parliament, she has issued an urgent plea for as much help as possible in spreading the world: She said: “We need the UK to act now!
“We need 100,000 signatures by 24th September to make sure this cannot be ignored.
“I know that number feels impossible, but I will keep fighting with everything I have for Brogan and for every other person living with Friedreich’s Ataxia.
“Friedreich’s Ataxia is progressive. That means it can get worse over time and we don’t know what the coming months and years could take away.
“Imagine watching someone you love struggle day by day with everyday things that so many of us take for granted — walking, standing, getting dressed, writing, eating, using their hands or simply getting through the day independently.
“2 minutes of your time could make a huge difference.
“Please sign the petition, share this post and ask your friends and family to sign too.”
At time of writing, the petition has over 42,000 signatures.
Mandy O’Connor, Labour Party councillor for Victoria Ward, and Cabinet Member for Children and SEND, Southend Council, has pledged support to the cause, saying: “If you want to do one extraordinary thing today, then please sign and share the petition!
“I know Karly, and I have met her beautiful daughter, Brogan. This is a devoted and courageous mother, fighting with everything she has to obtain medication that will have a profound effect upon her child’s life.”
Sign at: https://petition.parliament.uk/petitions/760461
Picture: Brogan, 17, with her mother. Pic: Karly Johnson
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