Left Hand Valley Courier - All Local, All The Time

By Vicky Dorvee
Editorial@lhvc.com 

Mila’s Miracle Foundation Update

 

September 15, 2017



On the precise day they needed to have raised $100,000, Labor Day, Mila’s Miracle Foundation (www.StopBattan.org) hit its goal and received the promised matching funds. Thanks to an anonymous donor, the amount was doubled to give them $200K toward their search for a cure. Combined with other private donations, the organization sits just shy of $300,000 for this phase of the foundation’s endeavors.

Mila’s mother, Julia Vitarello, said as the deadline to receive the matching donation approached, “Tons and tons and tons of people stepped up.”

Other good news: the medicine company the foundation is working with has extended the original deadline to collect a total of $1M from the end of September to the end of October 2017.

There’s still significant financial support they need in order to continue on their timeline to cure Battan Disease. Another $700,000 is needed to write a check for the next phase of testing – producing the medicine for clinical trials with six children who have Battan Disease. Julia Vitarello said they are actively seeking additional large donors and those willing to incentivize donations by offering matching funds.

Mila was diagnosed late last year with Battan Disease, a rare genetic disease that appears around age three and degenerates the mobility, speech and sight of the child, eventually resulting in death before age 10. Mila’s parents are determined their foundation will assist with curing not only Battan Disease, but other rare diseases through the research their medical team is heading up. With the results of their research and testing, they expect that broad tools will be developed that will allow the same type of medicine and its delivery technique to be successful in ending the suffering of others with rare diseases.

To donate to Mila’s Miracle Foundation, go to http://www.gofundme.com/savingmila or http://www.stopbatten.org.

 

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