Updated September 14 with correct IBAN

A 12-year-old girl who suffers from a very rare neurological condition is seeking financial help to fund her intensive therapy.

Ella Debono is only the second person in Malta to suffer from the Central Core Disease, with the other patient being her own mother, Maryelene.

Ella was diagnosed with the disease, which affects the muscles closest to the body, at birth. There is no known cure for Central Core Disease. 

To try to get help with treatment, the family registered an NGO - the Central Core Disease Foundation - and set up a Facebook page, Ella’s Endless Battle, to solicit help.

Because of the disease, the 12-year-old suffers from scoliosis and hyperlordosis. While the former is a sideways curvature of the spine, the latter is an excessive inward curvature of the lower spine. 

These have affected Ella’s muscles, respiratory system and bones. Ella is also autistic, Maryelene, who is wheelchair-bound because of the disease, said. 

She added that regular activities which other children do are a challenge for Ella.

“Getting on a pavement and climbing stairs are difficult tasks for her and she sometimes also stumbles on ramps. At the playing field, Ella can only use the swings as she is not able to get on slides and other equipment,” she said. 

Why does she need financial help?

In a post on Facebook Ella said that to prevent an operation that could land her in a wheelchair, intensive therapy is needed and this comes at a high cost.

This includes occupational therapy, physiotherapy, speech therapy and a bi-yearly visit to specialists in Britain. 

If therapy is successful, Ella’s situation can improve substantially. By strengthening her core and back muscles, the 12-year-old can start walking quicker, play with other children and no longer suffer from severe back pain, Maryelene said. 

Her daughter, she said, is determined to succeed despite the challenges. She sings in a choir and has released a song about autism, Kastel Maġiku.

Ella wants to be independent enough to go out with her friends, Maryelene said, adding that the public's help is needed to fund treatment as the government only offers physiotherapy every eight weeks, which is not enough.  Donations can be sent to the Bov Mobile App on phone number 9986 4524 or BOV account; IBAN no. MT34 VALL 2201 3000 0000 4002 5769 292.