Major drive underway
Škofja Loka fundraising for Matic
8 year old with rare disease
Backstory
In Škofja Loka, Matic Žontar has a very rare disease, for which a cure was discovered in the USA last year. EUR 3.2 million must be raised for it. Parents and relatives took care of the first million by taking out a loan, we collected the second together in Škofja Loka and also elsewhere in Slovenia, and we will try to collect the third through a broad campaign throughout Slovenia and the world.
On Monday, January 20, 2025, on Matic’s 8th birthday, we founded an informal initiative “For Matic” for this purpose, whose honorary president is the mayor of Škofje Loka, Mr.Tine Radinja, and I (Miha Ješe) am the chairman of the board of iniciative, which will help the parents and the Viljem Julijan Society to collect the missing million EUR.
We invite you to join our campaign to collect the necessary money for the medicine by February 28.
How can you help?
There are a number of ways that you can make a donation.
By Bank Transfer
SI56 0400 0028 1688 717
Reference: SI00 444777
Purpose: »For Matic«
SWIFT bank code: KBMASI2X (OTP banka d.d.)
OR via transfer to bank account of Viljem Julijan Association:
Address: Viljem Julijan Association for Children with Rare Diseases
Cesta Leona Dobrotinška 2, 3230 Šentjur, Slovenia, VAT number: 98136399, Registration number: 4107870000

8-year-old Matic from town Škofja Loka in Slovenia suffers from an extremely devastating, cruel, and merciless rare genetic disease – Duchenne muscular dystrophy – for which there was, until recently, no treatment. However, a revolutionary new gene therapy Elevidys has recently been developed and approved in the United States, giving patients hope for a new life.
Since the gene therapy has not yet been approved in Europe, Matic can only receive it if his family takes him to the USA and pays for the treatment themselves. The gene therapy, along with treatment costs, amounts to €3.2 million. Matic’s parents are using all their savings and taking out loans to cover the costs, but this will not be enough. Thus, Matic’s only hope of receiving the treatment is to raise the remaining €2.2 million through donations. A major fundraising campaign is led by the Viljem Julijan Association, with additional support from the Initiative for Matic.
Charming and cheerful Matic, who turned 8 in January 2025, was diagnosed at 11 months of age with a severe, cruel, incurable, and rapidly progressive genetic disease called Duchenne Muscular Dystrophy. The disease causes unstoppable degeneration and breakdown of muscles throughout the body, progressing rapidly after the age of 7 to 8. As a result, patients typically lose the ability to walk between the ages of 10 and 12 and are permanently confined to a wheelchair. Afterward, they gradually lose other motor functions and become practically paralyzed from the neck down, often with spinal deformities and joint problems. Because the disease also affects the respiratory and heart muscles as well, patients face increasing cardiac and respiratory problems, and life expectancy rarely extends beyond their 20s. The average life span of individuals with this condition is just 28 years.

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