GRACE Brierley’s parents were not sure when they would see their little girl take her first steps.

But with the help of a walking frame she has done it.

The 20-month-old is one of less than 30 children in the UK with a rare, potentially life-limiting syndrome — and there is no cure.

Maroteaux-Lamy Syndrome (MPS VI) can cause inflamed organs, deafness and sight problems.

Grace’s parents, Jemma Rodzoch, aged 33, and John Brierley, aged 37, of Grasmere Avenue in Little Lever, accepted she would need the help of a frame seven months ago when they were given the devastating diagnosis.

The inherited syndrome will affect Grace’s skeletal frame because sufferers lack the enzymes to aid the building of bones, cartilage and tissues. All of her organs are inflamed and it affects her sight and hearing.

But that has not stopped bubbly Grace crawling and giggling like other toddlers and now, she has even taken her first steps. Ms Rodzoch, who gave up work to become Grace’s carer, said: “She’s doing really well and now she’s walking about and she’s wearing her orthopaedic shoes.

“She can climb up stairs and get up onto the couch as well.

“She’s getting there but her development is definitely delayed but she is still managing to say certain words. We’re getting there slowly and she seems very happy.”

Due to there being so few sufferers, it is not known how Grace will be affected by the rare syndrome.

The little girl, who has a five-year-old brother Alex, is receiving weekly enzyme replacement therapy, which takes four hours each session, and helps to reduce nonneurological symptoms and pain.

On top of her enzyme therapy, Grace has MRI scans to check her heart, X-rays and regular eye and hearing tests to monitor the symptoms.

Ms Rodzoch’s mum, Eileen Rodzoch, organised a Valentine’s Day-themed fundraiser on Thursday at Campbell House, in Campbell Street, Farnworth.

All of the money raised went to the MPS Society, which supports research, awareness and information for those affected by the condition.