TWIN-CREDIBLE COURAGE: Mum’s Fight For Life-Saving Drugs For Twins Born With Rapid-Ageing Disease

A brave mum is fighting to get her hands on a drug that could help her twin daughters battle a rare disease that makes them age rapidly.

Devoted Elismar Carneiro da Silva noticed something was wrong with her twin daughters Elis and Eloa Lima Carneiro when they were around four months old.

Their symptoms included what seemed to be signs of getting old, like hair loss and wrinkles.

After several months of tests and consultations with specialists, it is now believed Elis and Eloa – from Boa Vista, Brazil – are the first twins in the world with progeria.

Progeria – or Hutchinson-Gilford syndrome – is an extremely rare, progressive genetic disorder that causes children to age rapidly.

Sufferers generally appear normal at birth, but symptoms begin to appear during the first year.

The average life expectancy for a child with progeria is about 13 years, with heart problems or strokes being the eventual cause of death in most cases.

Image shows Elis and Eloa Lima Carneiro, in undated photo. The children from the city of Boa Vista, in Roraima, Brazil, were diagnosed with the Hutchinson-Gilford progeria syndrome. (CEN)

Elismar – a seamstress and single mother – has eight other children.

Luckily, her children Guilherme Lago, 20, and 14-year-old Maria Eduarda Lima are able to help look after the twins, who are now 20 months old.

Elismar describes the girls as “the joy of the house” and “my reason for living today”.

She is currently fundraising online, as her wages cannot pay for all the girls’ expenses.

Elismar told local media: “We mainly need nappies, milk, basic hygiene products, and children’s sunscreen because of the girls’ skin.”

She also told of the difficulty of getting treatment.

To attend appointments, they cannot use public transport because it is not air-conditioned, but Elismar does not have a car and cannot always afford a taxi.

She said: “Sometimes it’s very difficult, they end up not having a treatment routine because of this.”

Image shows one of the Lima Carneiro twins, undated photo. Elis and Eloa Lima Carneiro from the city of Boa Vista, in Roraima, Brazil, were diagnosed with the Hutchinson-Gilford progeria syndrome. (@elis_e_eloa/CEN)

Despite this, the girls appear happy, and although they do not speak much – jokes Elismar – “they have their dialect”.

The mum opened up: “I can be tired, sad, but when I see their development, always showing something new, it’s very rewarding, every little step, every gesture, I can’t help but cry.

“I always get excited. It is a privilege to take care of them. I have a lot of faith that things will get better, my dream is to see them living in a better way, with more structure.

“I know that there is an age limit for people who have progeria, but no mother wants to believe that her child is going to die, this is not the natural order of things.”

Elis and Eloa are not currently on medication but receive nutritional support, physiotherapy, speech therapy, and occupational therapy.

The family is also in touch with the Progeria Research Foundation (PRF) – a non-profit organisation in the USA.

The twins’ brother Guilherme told local media: “They told me that there is no cure for the syndrome, but there is a medicine that delays premature ageing.”

They are now waiting for the Roraima state government to complete procedures for them to receive the drug from the PRF free of charge.

Guilherme said: “I am really looking forward to that day coming soon and for them to get this medicine, which they don’t have in Brazil.

“My dream is for them to live many years with the help of the medication. I know they may not have much time to live, but I want them to live as best they can.”

Elis and Eloa have their own Instagram account, with more than 3,000 followers. It can be found at www.instagram.com/elis_e_eloa.

Image shows the Lima Carneiro twins, undated photo. Elis and Eloa Lima Carneiro from the city of Boa Vista, in Roraima, Brazil, were diagnosed with the Hutchinson-Gilford progeria syndrome. (@elis_e_eloa/CEN)

Guilherme said: “There’s no shortage of love here, a game they play together, a look, a smile, everything gives us a reason to be happy.”