Twins with aging syndrome become phenomenon on the internet and conquer fans
Followers, treats, gifts, affection and thousands of fans. All that digital influencers are entitled to, the twins Elis and Eloá Lima Carneiro, 1 year and 9 months old, achieved in less than 60 days. With more than 100,000 followers and 17.8 million views on social networks, the family of the twins diagnosed with the rare Hutchinson-Gilford progeria syndrome — which causes premature aging and affects development — are celebrating the repercussion and visibility that their girls are bringing to the rare condition.
- See the g1 Roraima special page
g1 was the first site to tell the story of the twins by interviewing the girls’ mother, Elismar Lima Carneiro, 39 years old. Prior to the publication of the article, their Instagram account — managed by their brother, 20-year-old marketing student Guilherme Lago — had around 80 followers. Currently, the twins already have 118,000 followers, an increase of 124,900%. (See the most viewed video above).
“After the g1 article came out, their possibilities expanded, for example: we reached a huge number of people who like them, who are following them now on social networks, in addition to that also in terms of health as a whole, it opened doors to discuss care for children with rare conditions”, declares his brother, Guilherme.
With the repercussion of the case, they made a crowdfunding online on social networks to raise the necessary resources for their treatment. The given target was R$ 150,000 — which was achieved in less than 24 hours.
The girls are being followed up by the Progeria Research Foundation Institute (PRF), in the United States. There are currently 400 people living with the condition who are being studied by the American Institute worldwide. In Brazil, in addition to the girls, they monitor seven other cases.
The twins’ family received the report with a diagnosis of progeria on December 28, 2022, at the Reference Center for Women’s Health, a public government unit, where they are accompanied by neuropediatrician Charlote Briglia. The condition accelerates the aging process by about seven times the normal rate.
‘Charisma that enchants’
The numbers that Elis and Eloá reach on Instagram are impressive. In all, the sisters’ videos add up to an impressive 17.8 million views. The most watched video shows a moment of affection between the twins with the caption “when mom is around” and then they fight with the caption “left”. The joke accumulates more than 5 million views. (Watch at the beginning of the report).
The comments are always welcoming and loving. One of the followers comments “They represent those who have a brother. We give life, but we don’t dare to get a glass of water”. Another follower comments “But guys, cute at the beginning, the ending surprised me, sisters being sisters”.
According to Guilherme, the content of the sisters messing around — and sometimes falling out — is what followers love most. For him, the girls’ charisma conquers anyone.
“It’s gratifying to show their daily lives to so many people, the fight is very inspiring for everyone here, and to show that they are playing, living, learning… Many people send messages to their accounts and say: ‘I’m very happy, they they brighten my day, when I’m sad they make me happy’… sometimes I post videos of them fighting, like a sister who loves each other. They are very funny. The charisma that enchants”, reports the brother.
For the mother, the intention is to publicize the girls’ daily struggle, to raise awareness about rare syndromes and also to show in a relaxed way how dear the girls are. She is still not used to the “fame” of her youngest daughters.
“Our intention in always disclosing and showing is to improve more and bring visibility. It’s very rewarding. I haven’t even realized that my daughters are famous today. Wherever I go, they ask: ‘where are the little princesses?’ Important people visit them. We receive things, gifts, letters. Until yesterday they were ours alone, today they are famous”.
Guilherme says that the girls receive gifts, clothes, toys, letters from fans and the results collected on social networks are always positive.
“Within the whole situation of being a syndrome, there is this good side that we are experiencing, of receiving support from people, the support is very great. They fill their direct, it is very full. post more. I can’t go a day without posting and people start asking: ‘where are the girls, how are they?'”.
“Before the g1 article came out, they didn’t even have 100 followers. It all happened very quickly. They have fans! People send them gifts, many gifts, lots of treats even arrive in the mail. I’m going to have to open a PO box for them ! People send me messages! They get a lot of love!”
support network
Guilherme points out that Elis and Eloá are successful with children. Children get in touch with their profile by sending declarations of love, letters and even drawings to the twins. According to him, all this is due to the “cuteness” of the girls.
“There are a lot of children who are really fans of them. Today a little girl was calling me on Instagram in the morning and sent me an audio later saying: ‘hi Elis and Eloá, don’t you want to answer me?’, I explained that I was their brother and everything else, but still, what love! All this love and support that we are receiving is very gratifying”.
Social networks also allowed Elis and Eloá to find other families who live with someone with the syndrome. Parents of children with Progeria across Brazil contacted Guilherme and together they set up a support network for health support.
“It’s a rare condition that very few children in Brazil have. But on average, about 10 people contacted me and reported it. There were about three people who, unfortunately, the child is no longer here, but who gave great support to the girls” , said the young man.
The mother highlights the success the girls are having when they go out on the streets of Boa Vista.
“On the street these days I took a taxi and the driver asked to take pictures with them. A lot of people ask to take a picture with them, it’s a lot of love and a lot of support. The feeling with this visibility is one of optimism, of improvement. people have a diagnosis, they start to be afraid, but thank God everything worked out”.
advances in health
When g1 visited the sisters in January, they were in contact with the institute to send the genetic material to the United States and continue with the follow-up. They were also experiencing traffic difficulties to go to specialist doctors’ offices due to the distance.
Now, the family has managed to have the girls’ genetic material analyzed in Brazil and only the result sent to the United States — avoiding bureaucracy. And with the repercussion, specialists are ready to accompany Elis and Eloá spontaneously.
“We already got a consultation with the geneticist and he has now passed some tests that we are going to do to see whether or not they will receive a drug to treat the effects of Progeria. progeria in the world”.
“I think we managed to open this door and we don’t want to let it ever close. In the same way that they managed to get a consultation with specialties that the SUS doesn’t have here, other mothers can also get it. This look at the child with rare conditions within the state was a conquest”, declares his brother.
With the money collected from the online crowdfunding, the family intends to make improvements to the house where they live – which continues to be at the back of a plot of land in the western part of Boa Vista. As girls are sensitive to heat, the idea is to make an air-conditioned space.
“This money will be used for their comfort, which here at home will be renovated so that they can better cope with the heat in Boa Vista and we will also use it to make periodic appointments with specialists. They need very special attention, when we have that possibility to take them to the private, where we will have a greater attention, consequently their development will be better”.
To follow the content of the girls, just access the page on Instagram.
Tags: Twins aging syndrome phenomenon internet conquer fans receive lot love years
--
