Five-time Paralympic gold winner Ellie Simmonds investigates dwarfism drug in BBC documentary

Five-time Paralympics gold medallist Ellie Simmonds is fronting a BBC documentary investigating a controversial new drug which could spell an end to dwarfism.

Ellie Simmonds visiting the new Sandwell Aquatics Centre in January this year
Ellie Simmonds visiting the new Sandwell Aquatics Centre in January this year

Ellie, from Walsall, has achondroplasia – a genetic condition which is the most common type of dwafism in the UK, causing people to be born with shorter limbs.

But now there is a controversial drug nearing the market in the UK, with the NHS running trials for its roll-out/

The drug, vosoritide, has been developed to treat children with achondroplasia.

Ellie Simmonds in the pool

Now the former Paralympian, whose parents are from Aldridge, is exploring both sides of the debate to answer the question: "If cutting edge medicine can stop disability in its tracks – should we use it?"

Speaking ahead of the documentary to the BBC, she said: "If I wasn't a dwarf, I wouldn't have gone to the Paralympics and made a career as an athlete that way. So I thought, 'gosh, if this drug was around when I was a kid, would I actually be who I am today?'"

In the documentary Ellie travels around the UK and the US, where the drug has already been rolled out, and explore all sides of the debate, including meeting families embarking on the drug trial, others who feel treatment would have positively impacted their lives, as well as those who are proud of their identity and question the aims of the drug.

The athlete meets others in the dwarfism community who share concerns over parents of children with Anchondroplasia may want to use the drug – regardless of whether their child suffers any associated health problems.

She meets with the likes of American couple Joe Stramondo and Leah Smith. Joe, in the film, says: "The assumption is that dwarfism is a problem that needs to be fixed. Largely, the folks in the dwarfism community celebrate our differences."

The Paralympian also meets some of those involved in the NHS trial during the documentary. One of those children is 10-year-old Talia. Since taking the medication, she has grown six centimetres in 12 months, which is two centimetres more than the average for a child her age with dwarfism.

In the documentary, her mother Rocana cites different reasons for participating, including that increased limb length allows her daughter to perform tasks like running or catching more easily. She also speaks about health problems that Talia faced earlier in life, including bowed legs, spinal problems and sleep apnoea.

In California, Simmonds meets the Haider family, who enrolled on the US trial of vosoritide and are strong advocates. Ahmin, 12, who has used the drug for three years, describes why he wants to continue.

The athlete will reflect and draw on her own experiences and interrogate her "own beliefs and preconceptions" as questions are raised between science and disability.

The documentary – Ellie Simmonds: A World Without Dwarfism – will air on Tuesday at 9pm on BBC1.

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