Life full of movement for girl with mobility problems

It's that time of the year... Marylene Debono's mother starts calling The Times to raise awareness, and hopefully funds, to treat her daughter's condition. She refuses to sit back, "lock Marylene and her neuromuscular condition away in a cupboard and forget" - as she puts it.

Angele Debono won't accept her lot, without doing everything in her power to improve it, or at least try.

This year, we visit Ms Debono in Zejtun... now a bubbly 19-year-old who appears not to be fazed by the fact that she was born with the bilateral dislocation of her hips, meaning she has mobility problems.

She is studying for her O levels to enter the Malta College of Arts, Science and Technology and be able to find a job.

"It is not such a disaster," she says from her chair on wheels, parked under the kitchen table. "She's more courageous than all of us put together," adds her mother.

According to her doctor, under whose care she has been since birth, all conservative treatment failed to realign her hips in the post-natal phase due to a rare muscular condition known as central core disease, which causes weakness, particularly in the muscles around the hips.

Ms Debono also suffers from scoliosis, which developed during the start of her growth spurt around seven years ago and due to frequent sitting and the use of calipers.

Mentally, she is all there!

Her nails are painted - and she even paints those of others. She is dolled up, but not quite enough for her photographs to be snapped, laments the vain teenager. Eventually, however, she succumbs to the lens - as any girl would in the end.

Ms Debono may have "some limitations", but they do not stop her from doing drama and wheelchair dancing and always "running around".

Her wish is to be able to drive a car to increase her independence, but, she also hopes to take part in the Razzett tal-Hbiberija upcoming Ability Challenge and is looking for sponsors.

It is evident that part of her drive comes from her upbringing and her mother, who has never given up. Together with the support of her grandmother, with whom the family lives, and her aunt, Ms Debono strives to live as normal a life as possible.

And their efforts have not been in vain... Ms Debono would probably not be where she is now if her parents did not organise regular physiotherapy, hydrotherapy, occupational therapy and massages... to strengthen her back muscles and prevent further deterioration of her scoliosis, as well as transport back and forth from the gym.

In fact, her parents are always driving her around... and have even waited for her outside nightclubs in Paceville until the early hours to be sure she is not missing out, but in safe hands.

"We feel sorry for her, but she doesn't seem to mind!"

Life would be less expensive if the teenager's agenda were not so packed, but Mrs Debono would not have it any other way... even though her husband has been unemployed for the last five years, and the government has other priorities, although it has often helped out in the past.

Financial constraints do not prevent her from travelling to Hammersmith Hospital in the UK and to Cyprus for other treatments, which have led to improvements in her condition.

Over the last six years, Ms Debono is "not becoming weaker and is improving her functional abilities", according to her doctor. And even the teenage girl and her family can see and feel the difference! Three months ago, she stood up, with the help of her rollator.

"I don't expect her to walk alone, but to increase her level of independence. She manages to get on and off her bed and even wash herself," says her mother.

There's no way she would not keep her yearly appointments with Hammersmith Hospital - assessments that date back to when Ms Debono was just over a year old.

"If something goes wrong I would feel so bad that I did not take her...

"It is not from nothing that we have reached this point," says Mrs Debono. "Had I given up, she would be in a bed."

It is not that she is being unrealistic, or hoping for a miracle. She intends to continue plodding on in the belief that there is hope.

Ms Debono is due for another assessment by neurologists at Hammersmith Hospital next month and her mother is appealing for financial help, although their burden is slightly alleviated by the fact that they are staying with a Maltese family in the UK.

Anyone wishing to assist them in their medical travels can make donations to HSBC account number 056050925051 or send them to 15, Triq Lorenzo Gafà, Zejtun.