1.2 million Euros from donations for the treatment of a genetic disease (SPG 56) – but all the information found online shows that there is no treatment at the moment

Hi, I’ll start by saying that I’m not the unbelieving Thomas, and I’d even donate money for this case, but no matter how much I looked for information about the disease, I couldn’t find any credible source that revealed that there is this miracle treatment that costs 600,000 euros/dose and it should cure two children suffering from the genetic disease SPG 56. The more I searched, the stronger my suspicions are, unfortunately.

It is about this casepublicized since the beginning of the year on Facebook, by many influencers from the charity field. In many of the posts it is claimed that a genetic treatment was developed, in the form of a single dose that cost 600k euros, two such doses being necessary, one for each child. For an undisclosed reason, these doses can only be given at the beginning of September, so if the difference in money is not raised (yesterday 80,000, today there are 20,000 left), they say they will be forced to choose only one of the children one will benefit from treatment, and the other will remain disabled for life (why, I don’t give explanations, I don’t understand why they can’t be treated separately, depending on when the money is collected, considering that they are of different ages) . Also, I did not find it on the father’s profile, nor on the mother’s, nor on donation site dedicated posted medical documents to prove that the little ones suffer from this disease. Even the way the posts are written, resorting to urgency and emotional blackmail (e.g. “what happens if the remaining 50,000 euros are not collected in a few days? We will have to choose which of the two children will be saved and which will remain disabled for life”), as well as the statement that only 13 people suffer from this disease in the whole world (from online sources I found that there are approximately one million cases), make me ask myself more and more questions.

Also, the accounts in which this amount was collected are the personal accounts of the talal, although it seems that they also established a association.

Thus, my main suspicion is given by the fact that I cannot find any credible information that mentions that a treatment has been discovered for this rare disease (the existing news only mentions that clinical trials are being carried out and that until a possible treatment will probably take some years). If among you there are also people from the medical field, or who have evidence that this miracle treatment really exists and that it is not a horrible scam in the middle, supported probably without science and by many people with good souls who got involved physically and soul in this case, I would be happy and even donate to help these children.