Mother of twins with aging syndrome talks about diagnosis of the rare condition

Twins Elis and Eloá Lima Carneiro had a Christmas dinner common to any child aged 2 years and 7 months, with games, food, photos and lots of fun. But for their mother, Elismar Lima Carneiro, 40 years old, this time has a different taste: that of conquest. This is the first Christmas that the twins, now talking and walking, celebrate with a confirmed diagnosis of the rare progeria syndrome, which causes premature aging and, beyond any doubt, the girls end the year on a positive note.

“It was a year of positive balances. Last Christmas we were still receiving, conceiving things, we had many doubts… we came from a year of discoveries and uncertainties… imagine you are entering such an uncertain path and now you know what you are dealing with”, said the mother from them.
In January this year, g1 told the story of the girls who are the first case of the syndrome treated by the state health network in Roraima and, according to the Instituto Progeria Research Foundation (PRF), in the United States, they could be the first case of the syndrome in twins around the world.

After the repercussion of the article, the girls gained followers, treats, gifts, affection and millions of fans. Adding up all social networks, the twins have around 1.5 million followers — on Instagram alone, there are more than 500 thousand. All of this was celebrated at the family’s Christmas.

The report indicating the condition was issued on December 28, 2022, at the Women’s Health Reference Center, a public unit of the government of Roraima. In June 2023, after a series of tests, the Progeria Institute confirmed that the girls have this rare syndrome and, now, the institute is closely monitoring the case of the girls from Roraima.

With this, the family is waiting for the Institute to send a special medicine that delays the effects of progeria. The condition accelerates the aging process by about seven times the normal rate.

There are currently 400 people living with the condition and who are studied by the American Institute around the world. In Brazil, in addition to the girls, they are monitoring seven other cases.

“Now we are going with new specialists, doctors, always monitoring their development. The expectation is that perhaps in May 2024 this medicine will be available to them”, said Elismar Lima.

Differentiated Christmas

The family dinner was at a cousin’s house. Together with several relatives, the twins played and waited until midnight on Monday (25) to eat dinner. They took photos with the Christmas decorations and, according to their mother, they even did something wrong: they drank some soft drinks in secret, something not recommended for them.

For the girls’ brother, marketing student Guilherme Lago, 21 years old, this Christmas was a moment of reflection on all the “turmoil” experienced in 2023. For him, the family’s life changed completely.

“Actually, this Christmas was different, I think because of all the meaning this year had, our entire history, everything that happened. At the end of the year we become reflective, we bring the whole retrospective, we get emotional and, my God, how our lives changed this year”, Guilherme told g1.
The mother and brother agree on one thing: the repercussion on social media and the help given by followers was essential for the girls’ year to end on a high note. For the brother, Christmas also served to reflect on this.

“This year, for example, I had a celebration with half a million people following the girls on Instagram. This is very surreal. Bring that difference to our Christmas. Now, we celebrate with our blood family and also with the people who follow the girls on social media.”

Elismar, who gave up her job as a seamstress to dedicate herself exclusively to the girls, is emotional and highlights that the help was so much that she didn’t even need to buy diapers for the girls during the year 2023.

“The coolest thing is the things we receive. We received a lot of diapers. To give you an idea, it’s been a year since we bought diapers. We receive so many things that are sent to us that sometimes we donate them”, said the mother.

“We received a lot of affection, people welcomed us, welcomed the girls, welcomed our story. A lot of help indeed. It was a year of great achievement. Apart from the treats”, he added.
Guilherme, who has followed the sisters’ case closely since the first suspicions, dedicated Christmas time to thanking the help received via the Internet. The sisters even crowdfunded online in March this year on social media to raise the funds needed for their treatment. The goal given was R$ 150 thousand and was reached in less than 24 hours.

“Nowadays, thanks to the repercussion on social media, girls have no shortage of anything. If we need anything, like doctors and specialists, today we have this range of contacts. We have a lot of people willing to help us now”, highlighted Guilherme Lago.

‘They are the smartest’

Due to their condition, the twins’ development is slow, but each step is celebrated by the family. The girls are already walking, talking and playing, all with the help of different specialists specific to each area.

According to Elismar, the idea for 2024 is to continue monitoring every detail so that the girls develop to be able to walk and also speak more easily.

“Wow, they are already very developed. They are walking, talking, in their language, there are things that I understand what they are saying but someone else wouldn’t understand. When they want something they call me. Mom, Maria, Guilherme, they are already saying their names, which are the people they are close to”, explained Elismar.

Although they are twins, Elis and Eloá are different in personality — as the videos of their “disagreements” that went viral on Instagram show — they have a common interest: they are fans of Galinha Pintadinha. For the family, just the fact that they acquire tastes and have personality is something to celebrate.

“What they say a lot is ‘are you crazy?’ which is what they hear us saying. Even the slang that we sometimes say, they repeat. ‘Oh no’, they say. They are very intelligent, they have developed a lot. They are fans of Galinha Pintadinha. They watch everything on their cell phones and even know how to skip the commercial. Every day is a new discovery, they are the smartest”, said the proud mother.

Plans for the future

For 2024, the family already has plans that need to be prioritized, such as medical follow-up and the use of specific skin products. Due to progeria, girls have skin sensitive to the sun and heat, something difficult to avoid in Boa Vista which, in its hottest period due to El Niño, reached a thermal sensation of 40ºC.

Elis and Eloá go to the dermatologist frequently, use soaps, creams and sunscreen made especially for them, but all of this is still not enough for the girls to have a better quality of life in the heat of Roraima.

Guilherme highlighted that, during the hot period in Boa Vista, there was no other option than to always leave the air conditioning on. “Energy is more expensive, a job that we have to do, we have to go out of our way to pay for everything,” he said.

“The climate condition of our state is really not favorable. There is the issue of the sun and they are photosensitive, so sunscreen for them is a matter of priority, it is impossible to go out with them without that or UVA sleeve. Even so, we notice these little spots of melasma on the skin”, highlights the brother.

The family discovered that there is a rule that grants a 65% discount on the energy bill for people who need their air conditioning turned on frequently. Now, they are racing to get girls this right.

“We discovered that, in their condition, they have the right to this air-conditioned environment. If we prove to the energy supplier that they depend on air conditioning, they will help us with the bill. They asked for a more specific report, the first report was not enough”, said the mother.

Another priority for 2024 is to renovate the house where they live to better meet the needs of Elis and Eloá. The family lives in one on their grandmother’s land, who runs a barbecue kebab shop in the front, and they, with their mother and brothers, in the back apartment.

There is already planning for the renovation of the entire house, but due to setbacks, it had to be postponed.

“When we asked for the renovation with an architect who did the entire project, we didn’t think about other factors, for example: we live at the back of my mother’s house, other brothers were opposed… we had to negotiate. Everyone sat down, we reached a consensus, everyone accepted and we’re going to get our hands dirty”, highlights Elismar.