His heart is healthy
The cardiologist confirmed it: after his episode of SVT (a very fast heartbeat), Vakaris’s heart is healthy.
Vakaris loves life
Our little Vakaris is one of fewer than 100 children in the world diagnosed with UBA5 disorder. Seizures, hospital stays and medicines are part of everyday life for him. And still, he smiles.
Registered charity foundation
Company code 306847902Klaipėda, Lithuania
Lithuanian taxpayers directed €10,067.50 to Vakaris in 2026
News
A new home on the ground floor
We have moved to a ground-floor flat – no more carrying Vakaris up to the fifth floor.
His first trip to the sea
Vakaris saw the sea for the first time and dipped his feet in the waves.
Meet Vakaris
Vakaris lives in Klaipėda with his mum Gabija, his dad Arnas and his sister Evija. We noticed his first seizures when he was only three months old.
Today he is fed through a tube into his stomach every four hours and takes medicines and supplements, and the clinics in Klaipėda, Kaunas and Vilnius have become a second home: at one point he was admitted to hospital seven times in two months.
But Vakaris laughs, and he loves the pool, his guinea pig and SpongeBob SquarePants.
Gabija and Arnas, Vakaris’s parents
“We love him just as he is. Unconditionally.”
How you can help
Two ways to give: one helps Vakaris today, the other supports science that could one day help children with UBA5.
For Vakaris, today
Vakaris loves life foundation
Treatment, therapies and equipment: medicines, hydrotherapy, a standing frame and a supportive chair.
In your banking app, start a new payment and fill in:
Account number (IBAN)
LT73 7300 0101 8752 8842
Swedbank, Lithuania
Copy each one and paste it into your bank’s field. On a phone, hold your finger on the field and choose “Paste”.
Recipient
Vakaris loves life labdaros ir paramos fondas
The legal name in Lithuanian. Please use it exactly.
Payment reference
Donation for Vakaris
Amount
For example, €10, €25 or €50. Any amount helps.
Stuck? Call us and we’ll help: +370 647 60497
Sending from abroad?For UBA5 research
Raiden Science Foundation
A separate US foundation set up by the parents of Raiden, another boy with UBA5. It funds the UBA5 gene therapy being developed.
More about the foundationSo far the therapy has been tried in mice, not yet in people.
Donate to Raiden Science
Donations are made on their website, in US dollars.
Give 1.2% of your tax
For Lithuanian taxpayers: it costs you nothing. The state sends part of the tax you have already paid to Vakaris’s foundation instead of keeping it.
In 2026 this raised€10,067.50. Thank you!
By 3 May 2027
(for 2026 income)
Choose 5 years at once and you won’t need to repeat it every year. You can change your mind with a new request.
Questions about your tax return? VMI, the Lithuanian tax authority: 1882
Log in to VMI EDS
The tax authority’s portal, with online banking or an e-signature. Easier on a computer.
Open the request
Deklaravimas → Pildyti formą → Prašymas skirti paramą (FR0512).
Enter our code
Choose our foundation and press “Tęsti”.
306847902Enter 1.2% and the period
Up to 5 years. Press “Išsaugoti”.
Submit the request
Confirm and press “Pateikti”. It only counts then.
Other ways to help
Can’t give right now? Here are other ways to help.
Hold a fundraiser, or give as a company
A nursery fair, a basketball game or a concert: write to us and we’ll help. Companies get the paperwork they need for their accounts.
What is UBA5?
Every cell has tiny helpers at work. Because of a change in the UBA5 gene, one of them doesn’t work properly, and the brain and movement suffer most. There is no treatment for the cause yet, only for the symptoms. Scientists are developing a gene therapy, but it hasn’t yet been tried in people.
Fewer than 100 childrendiagnosed in the whole worldThe zebra is the symbol of rare diseases. Drawn by Evija, Vakaris’s sister.
The figure Raiden Science Foundation gave in 2026. About 40 was quoted publicly before; nobody knows the exact number. Medical name: developmental and epileptic encephalopathy 44 (DEE44).
The road to a treatment
- 2022UBA5 gene therapy research begins at UMass Chan Medical School, USA
- Feb 2026The therapy is licensed to the Raiden Science Foundation
- Sep 2026US FDA Rare Pediatric Disease designation (per RSF). It is not yet a licence to treat.
- NextStudies needed for regulatory approval, then the first clinical trial (no date announced)
The road to a treatment
- 2022UBA5 gene therapy research begins at UMass Chan Medical School, USA
- Feb 2026The therapy is licensed to the Raiden Science Foundation
- Sep 2026US FDA Rare Pediatric Disease designation (per RSF). It is not yet a licence to treat.
- NextStudies needed for regulatory approval, then the first clinical trial (no date announced)
Thank you for standing with us
Red NosesClown doctors who bring smiles to the hospital.
Questions
Does the money really reach Vakaris?
His parents run the foundation, and the money goes on his care. Thanks to your support we have, for example, a special chair, two support vests for his back and a feeding pump for home (€1,050). We share this on our Facebook page.
What does your donation pay for?
Vakaris’s treatment, therapies and equipment: medicines, tests, travel to clinics, physiotherapy, hydrotherapy, sensory therapy, a standing frame and a supportive chair.
What is the difference between the two foundations?
They are separate. The Vakaris loves life foundation helps Vakaris today. The Raiden Science Foundation (USA) funds a UBA5 gene therapy being developed, which may one day help children with UBA5.
I already give my 1.2% elsewhere. What now?
The first screen shows your earlier details: press “Tęsti” and add Vakaris’s foundation. The total can be up to 1.2%.
How can I give from abroad?
Send an international payment in euros (EUR) to the IBAN LT73 7300 0101 8752 8842, SWIFT/BIC HABALT22. Your bank converts your currency: check its fee and rate before you confirm.
Has your child been diagnosed with UBA5 too?
You are not alone. Write to us and we’ll gladly talk: vakaris.foundation@gmail.com. The Raiden Science Foundation has a family registry and parents’ group.
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Vakaris loves life. Be part of his.
You can give by bank transfer, or simply share his story with a friend.