Determined Hasti and her dad deliver plea to No 10

A YOUNG West Byfleet girl with a rare genetic condition has delivered a petition to the Prime Minister asking the government to deliver a modern rare disease framework before the end of the year.

Hasti Brannigan was accompanied to No 10 Downing Street by her father, Chris, during his 700-mile barefoot walk to help raise money to find a treatment for her condition.

Hasti delivers the petition to No 10 Downing Street with her father Chris. Pictures courtesy of the Daily Express

Hasti, 8, was born with Cornelia de Lange Syndrome (CdLS), which is characterised by reduced growth, developmental delay, feeding problems, speech and language difficulties, hearing problems and, in many cases, limb abnormalities.

Chris started the walk, from Land’s End to Edinburgh, after fundraising efforts for the charity Hope for Hasti were interrupted by coronavirus.

The petition, which has now been signed by more than 13,000 people, says that the current UK Strategy for Rare Diseases ends this year and that work to provide a new and modernised framework has stalled.

It urges the government to deliver a “comprehensive, modern and measurable rare disease framework before the end of 2020”.

Hasti’s mother Hengameh said that the size of the petition means that the government must give a response.

Hasti at No 10

“We are now hoping to get 100,000 signatures, which means there will have to be a debate in Parliament,” she said.

Chris and Hengameh have raised nearly £350,000 of their £400,000 target to pay for research to provide a proof of concept for a treatment for CdLS.

The longer-term target is £2.5 million for research and clinical trials of a possible effective gene therapy.

Hengameh said she and Chris hoped that the government will help to fund the bigger total, with further input from pharmaceutical companies.

For more information, visit www.justgiving.com/campaign/hopeforhasti and to see the petition, visit https://petition.parliament.uk/petitions/330174.

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