Three generations of mothers sit around the kitchen table animatedly debating whether to use a photo of little Ella Debono with this article.

Ella’s mother, Maryelene, is steadfast in her decision to shield the six-year-old – who suffers from a rare neuromuscular disease – from the vicious, hurtful online comments that followed her heartfelt appeal for funds in this newspaper last year.

But the girl’s grandmother, Angela, and great-grandmother, Theresa, are more pragmatic and acknowledge that without a photo, their fresh appeal was going to be diluted.

Ella Debono suffers from a rare neuromuscular disease. Photo: Chris Sant Fournier

“There are as many kind-hearted people as there are cruel ones, and what’s most important in all this is that we raise money for Ella’s treatment – the spiteful comments just go with the territory,” Angela said.

People’s meanness is not new to Angela: she faces it every time she goes knocking on people’s doors asking for money. She is often demeaned and has doors slammed in her face, but she is never disheartened, because among these hard-hearted people are the generous, sympathetic souls who erase the hurt with their compassion.

“We wouldn’t be here if it weren’t for people’s generosity,” Angela said.

There are as many kind-hearted people as there are cruel ones, but what’s important in all this is that we raise money for Ella’s treatment

The case sparks particular anta-gonism because Maryelene, 28, who suffers from central core disease – which affects the body’s muscular function – was medically advised against having children for fear her offspring would inherit the rare condition.

According to the family’s doctor, the mother and daughter are the only two known cases in Malta with this disease.

“In hindsight, everybody is clever. I wasn’t planning on having a baby. My boyfriend and I were happy and these things happen. I will never call Ella a mistake,” Maryelene said, adding that the situation was what it was and nothing was going to reverse it.

All she dearly wanted was to help Ella, who is also autistic and suffers from ADHD, and ensure she received the best treatment to have the best quality of life possible. Since the condition causes muscle weakness, the little girl’s legs often give way beneath her, causing her to tumble to the ground frequently.

Maryelene, who is wheelchair-bound due to a bilateral dislocation of her hips, refuses to let any obstacles hinder her mission. She is a hands-on mother, helping Ella with her homework, driving her to Inspire for therapy and cooking.

“The only disability I face is people’s ignorance.

“There are some parents who prevent Ella from playing with their children because they think autism is contagious. It’s really sad,” she said, looking protectively at her daughter.

Ella was playing with her pink My Little Pony, oblivious to all that was going on around her and her family’s debate on how to approach raising funds for her treatment.

Family doctor David Cefai, who listened quietly to the arguments, has been following the case ever since Maryelene was born.

“If it weren’t for Angela’s determination to give Maryelene the best treatment in the UK, she would be confined to a bed today,” he said.

Dr Cefai said that unfortunately, the family did not benefit from the free UK-Malta bilateral health agreement, as they had been told they could receive similar treatment here.

But this was not the case, as in the UK, unlike in Malta, Maryelene received an essential full assessment and treatment once a year at Great Ormond Street Hospital, he said.

The only disability I face is people’s ignorance

“The most frustrating thing in this case is having to witness the family being deprived of the ap-propriate care,” Dr Cefai said.

When asked why the family was not benefiting from the free bilateral health agreement, the Health Ministry said it was very sensitive to Ella’s needs. She had been seen at Great Ormond Street Hospital and her case had been reviewed by clinical experts from the Treatment Abroad Committee.

A multidisciplinary team of clinicians had been brought over to Malta from the London hospital to treat her last year, and another visit was planned this year.

“Reports from Great Ormond Street Hospital show that the hospital is satisfied with the care given to Ella Debono locally,” the ministry added.

Still, despite some assistance from the Malta Community Chest Fund, the family finds it hard to cover the expenses for Ella’s specialised treatment and travel abroad, and are hoping to raise €6,000 by September.

Donations can be made to HSBC account number 055-166317001 or by sending a cheque to 15, Lorenzo Gafà Street, Żejtun.