Magic Model

Sarah’s teenage girl has beaten the bullies beautifully Sarah Newell, 42, Eccles, Greater Manchester

- Angela Johnson/Matthew Barbour 

The moment I cradled my girl Robyn in October 2001, I knew.

Her long, slender fingers and high, arched palate were telltale signs.

I’d passed on Marfan syndrome – a hereditary condition affecting the body’s connective tissue, which provides the strength, support and elasticity to tendons, cartilage, heart valves and blood vessels.

Her big brother Jason, then 9, had it, too.

Poor littl’un

Most people with Marfan syndrome tend to grow very tall. Jason, now 24, is 6ft 5in, while I’m 6ft.

So to prevent Robyn growing over 6ft, doctors would prescribe oestrogen tablets from age 8.

The syndrome affects sufferers in different ways.

I have lens dislocation, leaving me partially sighted in one eye, blind in the other.

Jason has survived several collapsed lungs and his heart beats slower than average.

At 14 months, to combat scoliosis – a severe curvature of the spine – doctors put Robyn into a full body plaster cast to realign her back.

Then, from age 4 to 7, she was in a plastic support.

Poor thing couldn’t go down a slide, play in a sandpit, swim… ‘You have to wear it to get better,’ I explained.