A family from Lanzarote seeks help to treat the rare disease that their two daughters suffer from

The eldest son already died from this disease, Progressive Myoclonic Epilepsy Lafora, and now they need to raise money

September 27 2023 (19:44 WEST)
Updated in September 28 2023 (09:48 WEST)
Seeking help to treat their daughters for a rare disease
Seeking help to treat their daughters for a rare disease

An Italian family residing in Lanzarote for nine years is asking for "urgent help" to raise "as much money as possible" to treat the rare disease that their two daughters suffer from and that their eldest son also had, for which he died in August 2021. A disease that is genetic and only affects 400 people in the world, and specifically in Spain, the number is smaller, with nine people having the misfortune of living with it, Progressive Myoclonic Epilepsy Lafora, one of the most severe forms of epilepsy known.

Patients who suffer from it generally die within ten years, after suffering symptoms ranging from dementia to muscle spasms, unexplained falls, seizures, schizophrenia, difficulty speaking and walking, and poor school performance, among many others. Patients need 24-hour care from their families, as they cannot be left alone for a moment of the day.

This is the case of the two young women, Tracy and Carmen, 15 and 14 years old, who cannot lead a life like any child would want. "They cannot go to school normally, or study, or play sports" for fear of suffering seizures, which prevents them from "having a normal adolescence," the mother points out to La Voz.

There are two main things for which they are asking for help, one is someone who can take care of one of their daughters and also financial, to be able to "accompany our daughters in the sad journey" they are experiencing.

At the moment, the parents are on "medical leave" as they must dedicate all their time to caring for their daughters. Both are suffering from "depression" given the trance they are in. The loss of their eldest son, the first to contract the disease, on August 12, 2021, at the age of 17, has been one of the hardest blows they have had to face. Later, specifically three months ago, they have had to relive the same misfortune with their other two daughters.

The parents of the two girls are asking for "help" to raise money to treat their daughters' illness. "It is a very expensive treatment, which we cannot afford with the salaries we have," says the mother. A disease that they are being treated at the Fundación Jiménez Díaz University Hospital in Madrid, since here on the island "this type of disease is not treated."

"My daughters need to have quality of life," says the woman. An amount of money that, although it cannot be precisely specified, would be "2,000 euros per month" that they should raise to be able to face the situation.

They have tried to obtain support from some public institutions in our country, but "the evolution of the disease is not compatible with the technical times" that each of them can offer. At the provincial level, according to the mother, "we got a few thousand euros, but they ran out." We seek to "get the girls ahead without worrying about making it to the end of the month," something complicated since the parents "cannot return to work."

By making their situation visible, they want to thank "from the bottom of their hearts" all the people who stop to read their story and also those who want to contribute their grain of sand to change the lives of their daughters. Any type of economic donation, no matter how small, will be received with all their love. To be able to make donations, they provide the following bank account: ES79 2100 5420 4113 0046 2390.

On the website opened with the donation campaign, you can also contribute the amount of money you want and also, publicize the story by sharing it through as many means as possible. A campaign in which they have already raised 17,127 euros.

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