“Ours is a race against time, we know. If they could tell me to sign with blood and stop the disease where it is now, I would do it right away. You can’t, I know, but my husband and I said we couldn’t wait for Vicky to slowly lose her sight without doing anything“. Vicky’s mother, Silvia Cerolini, a Milanese living in London, has as much combativeness in her voice and actions as her daughter has in dealing with the genetic disease from which she is suffering and which leads to blindness.
The girl is 7 years old and has a genetic dystrophy of the retina, Leber’s Congenital Amaurosis, a rare genetic disease that affects two children in every hundred thousand. He will lose his sight within 10 years. His parents are fighting for this not to be the case, the way they have chosen is that of raising funds to finance research.
The next event is Thursday 25 March, an online auction. It was Vicky’s family who contacted famous people who gave a gift, 86 in all, to be given away to theEyes on The Future Virtual Gala. There are sneakers signed by Chiara Ferragni, the Ronaldo shirt, the AC Milan ball signed by Paolo Maldini, an hour of skating with Carolina Kostner, a day with the water ski champion Daniele Cassioli. It is possible to both participate in the auction and contribute to the fundraiser independently of this. Among the supporters of the evening there are Giorgia Palmas, Milly Carlucci, Gessica Notaro, Flavia Pennetta, Fabio Fognini, Filippo Magnini.
The commitment of Vicky’s parents has been going on since 2017. «We first used our social pages and a crowdfunding site and then we decided to organize an event in London in October 2018. It was a traditional gala dinner with fundraising auction. We had the support, through a letter, of the Countess Sophie of Wessex and we have raised more than 230,000 pounds. We thought of an event in attendance last year in Italy and then due to Covid we moved it online ».
All the proceeds, so far over 650 thousand euros, go to support research projects. Two are already underway and a third should start shortly. «The first project we financed looks for possible pharmacological treatments. They are testing four drugs on cells from patients in vitro to try to slow the progression of the disease. The second area is that of gene therapy. One already exists care, but it is only available on a gene that is different from Vicky’s. We are trying to apply this therapy to Vicky’s gene to allow other children to have it. ‘
Research has made many strides. The first medical conference on Vicky’s disease was organized by the family in 2019 in the USA, “for us it is essential that researchers collaborate with each other“. It is the same contact that is needed between families who live the same experience, a network was born that relies on associations such as Retina UK, Retina Italia, Candle in the Dark (Belgium), Foundation Fighting Blindness and RDH12 Fund for Sight (USA) .
The goal is to help Vicky and with her all the other children with this progressive disease. «Vicky», says her mother, «at seven, she is two tenths. Can read and write in large fonts. He is learning the Braille. He makes excellent use of the sight he has. It is a force. Climb trees. He says his superpower is Braille that other children don’t know. ‘
His strength also spurs parents. “When he was about two we found that he was bowing his head to look at things. We thought it was a common problem with many other children of developing one eye faster than the other. We investigated a neurological problem, which was thankfully ruled out. We then focused on the eye and from there it was seen that the retina was not responding. The genetic test he then gave the response. The world has fallen on us. It took us over a year to recover. Only now do the words of the mother of an older child with the same disease make sense to me: “You will be able to accept this when you realize that she can be happy even without sight” ».
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