Cure Minja #CureMinja #CureADSL
Donation protected
Greetings, everyone! We are reaching out to you for a heartfelt cause. Meet Minja, our two-year-old daughter, born in August 2021. She was a long-awaited and dearly cherished addition to our family of three.
However, instead of the joyful homecoming we had imagined, Minja spent the first six months of her life in the ICU due to multiple yet unidentifiable health problems. She was battling bravely while we waited anxiously, filled with despair.
Numerous diagnostic tests were conducted that initially yielded no concrete results. It wasn’t until Minja turned eight months old that she was diagnosed with an ultra-rare genetic disease, Adenylosuccinate Lyase (ADSL) deficiency – a devastating diagnosis that shattered our world!
WHAT IS ADSL DEFICIENCY?
What does this diagnosis mean for Minja? It means she has no ability to speak, nor can she control her head, much less sit up, crawl, or walk. Minja suffers from visual impairment, as well as frequent seizures. The life expectancy of children suffering from this condition is also shortened.
Our hearts sank even further as we realized that no effective treatment exists for ADSL deficiency. The very idea of witnessing her gradual decline, while not being able to do anything, is truly heart-wrenching.
HOPE LIES IN THE PROMISE OF GENE THERAPY
Fortunately, we have learned that there is something we can do to help Minja and other children suffering from ADSL deficiency. Gene therapy holds the promise of permanently improving her health!!!
Our mission now is to raise $400,000 within one year to support the development of gene therapy for ADSL deficiency. The first payment, due in March 2024, is $90,000.
This treatment has the potential to not only help Minja, but also hundreds of other children worldwide who have been diagnosed with this ultra-rare disease, as well as countless generations to come.
HOW CAN YOU HELP TODAY?
Donate: Your contribution, no matter the amount, is highly appreciated.
Share: Spread the word on all social media with hashtags #CureMinja and #CureADSL. Share this GoFundMe link with your friends, relatives, co-workers, and other potential donors.
We welcome any leads or tips that can bring us closer to victory!
WHERE IS YOUR MONEY GOING?
Every single penny will be allocated to cutting-edge ADSL deficiency research being conducted right now by several renowned hospitals and universities worldwide.
We are currently racing against time to fund the development of gene therapy for all children afflicted by ADSL deficiency. The earlier gene therapy is received by the child, the greater the chances are of it being an effective cure.
With pharmaceutical companies showing little interest in developing treatments for ultra-rare diseases, the responsibility falls on us – and with your support, we can make this treatment a reality!
Help us give Minja a chance to reach her critical milestones and reclaim her stolen dreams!
For this, we will be forever grateful!
Minja, little Lea, Zoran & Iva
SOCIAL MEDIA:
Minja je svoju borbu započela odmah po rođenju. Prvih šest meseci svog života provela je na intezivnoj nezi zbog problema sa disanjem, radom srca i epileptičkih napada. Brojne dijagnostičke analize su vršene bez uspeha. Tek nakon genetičke analize u osmom mesecu dobila je dijagnozu izuzetno retkog progresivnog metaboličkog poremećaja – deficijencije adenilosukcinatne lijaze (ADSL).
ŠTA JE ADSL DEFICIJENCIJA?
Kao i većina pacijenata ona boluje od teškog oblika bolesti koji podrazumeva epilepsiju, autizam, oštećenje vida i usporen psihomotorni razvoj. Zbog težine i prirode bolesti Minja još uvek nije uspostavila kontrolu glave, ne sedi, ne prati pogledom i ne govori.
NADA LEŽI U GENSKOJ TERAPIJI
Terapija, lek za ADSL na žalost ne postoji. Razvoj genske terapije predstavlja jedino moguće rešenje. Genskom terapijom bi bio uveden nedostajući funkcionalan ADSL gen, a to je jedini način da njeno zdravstveno stanje bude trajno poboljšano.
KAKO MOŽETE DA POMOGNETE?
Donirajte: Bez obzira na iznos svaka vaša donacija je više nego dobrodošla!
Podelite: Raširite priču na svim društvenim mrežama. Podelite ovaj GoFundMe link sa prijateljima, rođacima, kolegama i drugim mogućim donorima.
Dobrodošle su i svaka ideja ili predlog koji će nas približiti cilju!
GDE IDE VAŠ NOVAC?
Kako bi omogućili Minji da što pre primi gensku terapiju sva uplaćena novčana sredstva će biti upotrebljena za realizaciju prve faze pionirskog projekta razvoja genske terapije za ADSL deficijenciju koji sprovodi nekoliko renomiranih istraživačkih timova širom sveta. Razvijena terapija će pomoći svoj deci oboleloj od ove teške bolesti, sada i u narednim generacijama.
Pomozite nam da omogućimo Minji šansu za bolji život. Na tome ćemo vam biti večno zahvalni.
Minja, mala Lea, Zoran i Iva.
Organizer and beneficiary
Iva Milacic
Organizer
Santa Clara, CA
Minja Lapcevic
Beneficiary