Lenny Rush’s rare condition spondyloepiphyseal dysplasia congenita explained
- The 14-year-old will become the first children’s presenter of Children in Need tonight
- Lenny has said he hopes to inspire children with dwarfism through performances
Actor Lenny Rush will become the first children’s presenter of Children in Need tonight.
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 shot to fame with Our Family, a CBeebies series featuring different types of families, said it is ‘a real honour’ to be presenting.
Lenny has said he hopes to inspire children with dwarfism through performances.
He has spondyloepiphyseal dysplasia congenita (SEDC) – a rare condition caused 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 Bafta winner, who shot to fame with Our Family, a CBeebies series that looked at different types of families, said it is ‘such an honour’ to present
The form of dwarfism can cause a child to be shorter than expected for his age and gender. Adults with SEDC range between 4 feet and 4 feet tall.
Other signs of the condition include abnormally shaped joints, vision and hearing problems, a short neck and limbs, a broad chest and a curved spine – although hands and feet are still of average size.
SEDC does not affect intellectual development or life expectancy.
However, people with the condition often develop arthritis, have reduced mobility, hearing loss and joint stiffness.
About one in 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 notice SEDC after birth due to the characteristics of a newborn. It may also be noticed on an X-ray, CT scan, or genetic testing.
SEDC is usually not inherited from parents. Instead, it is caused by a new mutation when a sperm and an egg meet.
However, if one parent has the condition, there is a 50 percent chance that he/she will pass it on.
The mutation takes place in the COL2A1 gene, which produces collagen type 2.
Collagen helps form connective tissue throughout the body.
Type 2 is found in cartilage – the flexible tissue that protects joints and bones – and in the vitreous, the gel-like fluid that fills the eye.
There is no cure for the condition. Instead, treatment aims to relieve symptoms, prevent complications, and improve strength and mobility.
Some people with SEDC may need surgery to increase 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 also underwent surgery to place two rods in his back, stabilizing his spine.
In addition to Lenny, actor Warwick Davis also has SEDC.