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Lenny Rush’s rare condition spondyloepiphyseal dysplasia congenita explained

  • The 14-year-old will tonight become the first child presenter of Children in Need
  • Lenny has said he hopes to inspire children with dwarfism through performing

Actor Lenny Rush will tonight become the first child presenter of Children in Need.

The 14-year-old, from Essex, will take to the stage alongside Mel Giedroyc, Jason Manford and Chris Ramsey to host the fundraising show.

The Bafta winner, who rose to fame on Our Family, a CBeebies series that looked at different types of families, said it is ‘such an honour’ to be presenting.

Lenny has said that he hopes to inspire children with dwarfism through performing.

He has spondyloepiphyseal dysplasia congenita (SEDC) — a rare disorder triggered by a genetic mutation.

The 14-year-old, from Essex, will take to the stage alongside Mel Giedroyc, Jason Manford and Chris Ramsey to host the fundraising show

The 14-year-old, from Essex, will take to the stage alongside Mel Giedroyc, Jason Manford and Chris Ramsey to host the fundraising show

The Bafta winner, who rose to fame on Our Family, a CBeebies series that looked at different types of families, said it is 'such an honour' to be presenting

The Bafta winner, who rose to fame on Our Family, a CBeebies series that looked at different types of families, said it is ‘such an honour’ to be presenting

The form of dwarfism can lead to a child being shorter than expected for their age and gender. Adults with SEDC range between three and four feet in height.  

Other signs of the condition are abnormally formed joints, vision and hearing problems, a short neck and limbs, a broad chest and a curved spine — though hands and feet remain average sized.

SEDC doesn’t affect intellectual development or life expectancy. 

However, people with the condition often develop arthritis, have decreased mobility, hearing loss and joint stiffness.

Around one in every 100,000 babies are born with the condition, with girls and boys equally affected. 

Ultrasounds can detect the condition before a baby is born.

Alternatively, doctors may spot SEDC after birth due to a newborn’s features. It may also be spotted on an X-ray, CT scan or genetic testing.

SEDC isn’t usually inherited from parents. Instead, it is caused by new a mutation when a sperm and egg combine. 

However, if one parent has the condition, there is a 50 per cent chance of them passing it on. 

The mutation occurs in the COL2A1 gene, which makes type 2 collagen. 

Collagen helps form connective tissue throughout the body.

Type 2 is found in cartilage — the flexible tissue that protects joints and bones — and vitreous, the gel-like fluid that fills the eye.

There is no cure for the condition. Instead, treatment aims to ease symptoms, prevent complications and improve strength and mobility.

Some people with SEDC may require surgery to boost the range of motion in some joints and correct abnormalities in the spine and knees.

Lenny has had operations on his legs and to close a cleft palate — a split in the upper lip that is present from birth.

He has also undergone surgery to insert two rods in his back, which stabilizes his spine. 

As well as Lenny, actor Warwick Davis also has SEDC.

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