Between ages three and five, Julia and Alek noticed Mila was getting stuck on words, pulling books close to her face, falling backwards and moving her feet in an unusual pit-patter.
Assessed by neurologists, ophthalmologists, optometrists, orthopedists, and speech, vision, occupational, and physical therapists, no one could quite determine what was wrong.
After a long week of many tests, Children’s Hospital Colorado, diagnosed Mila with Batten Disease.
Batten is a rare neurodegenerative disease. The illness causes seizures, vision loss, cognitive impairment and early death. Every year, hundreds of children are born with some variant of Batten. Worldwide, roughly 14,000 children are afflicted with the disease. Siblings have a 25% chance of also developing the illness. Luckily, Mila’s baby brother, Azlan, tested negative for it.
Each variant of Batten is fatal and none of them have a cure.
The family’s life ended the day they received this diagnosis. They were given no hope but they didn't accept that so Julia started a foundation and spoke with scientists around the world.
What they have discovered is that gene therapy has STOPPED and even reversed diseases like Batten. Parents of children in recent trials are ecstatic by the improvements they are seeing. Mila and children with her type of Batten deserve the same chance!
One of the best hospitals in the world is committed to running the trial in the spring of 2018 and covering the costs of the trial itself.
HOWEVER, the family needs to raise the additional $1M to cover the costs leading up to it. Or everything stops. All hope is lost.
Julia is working so hard to make this trial happen not just to save her daughter's life, but also to end Batten Disease and pave the way to ending hundreds of other rare diseases forever.
You can help this beautiful family and many others, by donating to their GoFundMe campaign—
YOU CAN HELP with #SavingMila
1) GIVE what you can TODAY. No donation is too small (all tax-deductible)
2) SHARE this post far & wide! (Help this GO VIRAL!)
Mila still has her love of life and her laughter, but her light is slowly going out. Time is running out. A path to a cure now exists! Please help her family.
Schools out for Summer and that means your kids need to be Camp ready!
Throw away this years school backpack and get your kids a Beckmann backpack so they can be the coolest kids at camp! Beckmann has been making resilient, safe backpacks in Norway for decades and now they've brought their amazing brand to the U.S.A
With hip designs, padded straps, built-in flashing LED lights, and even a built-in rain cover, your kids will be ready for anything summer camp throws their way! These backpacks are light and the perfect size for travel as well!
What does Mommy really want for Mother's Day??
Mama wants to be in Paris! As much as she loves going to soccer games on Sunday afternoons and watching Sing for the upteenth time, she'd be lying if she told you she wouldn't rather be sipping champagne and eating fresh macarons in the most romantic city in the world!
Don't have enough money to fly her to Paris?! Lucky for you, Ladurée, the famous Parisian café, just opened in Georgetown and they have fun Mother's Day specials for your fave mom!
LADURÉE MOTHER’S DAY SPECIALS:
More Than a Bouquet of Roses: Treat the mother in your life to a decadent rose collection of delicate delights from Ladurée including Freshly Made Rose Jam, Rose Tea, Ladurée’s beautifully packaged Rose-Scented Candle and Rose Petal Macarons. No rose-tinted glasses are needed to revel in the power and seduction of Ladurée's Rose collection.
If She’s Not One For Roses: Gift mom with a custom selection of Ladurée’s floral-inspired macarons in flavors such as: Geranium, Lily of the Valley, Orange Blossom, Cherry Blossom and Lavender. Only thing sweeter is a trip to Paris! (Macarons are priced at $2.80 each)
A Limited-Time Collection Item: Sure to impress mom is Ladurée’s exclusive new Mademoiselle Macaron Box, a box of 14 macarons decorated with ornate flower chains and the lovely Mademoiselle Macaron ($48). For the practical moms out there who love a sure thing, Ladurée offers their whimsical Mademoiselle Macaron Bag, a handy tote bag decorated with the lovely Mademoiselle Macaron (Small: $35 / Large: $45).
Not Your Ordinary Mother’s Day Brunch: Upgrade Mother’s Day Brunch and treat mom to a Parisian chic tea service she deserves, pinky’s up. Served on custom Bernardaud China exclusively for Ladurée, enjoy petite tea sandwiches such as Mini Lobster Rolls on a Freshly Baked Brioche Roll, melt-in-your-mouth pastel macarons and Ladurée’s exorbitant selection of hand-selected fine tea blends.
For Moms Who Can Have Their Cake and Eat It Too: Ladurée’s Mother’s Day Fraisier Cake is your answer. The sweetheart-shaped cake starts with a hazelnut base, topped with creamy vanilla and strawberry mousse, decorated with fresh strawberries and white chocolate hearts. (Serves 4.)
Tis the season for outdoor entertaining! It's too warm outside for hot, heavy food yet we all want snacks with which to enjoy our refreshing summer cocktails and chilled wines! The perfect snack??....yummy cheese!
Here's a short and sweet guide on how to prepare the perfect cheese boards! Many thanks to the Daffodil Hotel and Spa for the wonderful tips!
After a long winter, I know we're all mentally ready for Spring Break but are you fashion ready?? I just absolutely ADORE this colorful, fresh tunic from Sulu Collection.
Sulu Collection offers high-quality fashion essentials that are elegant, versatile and chic! From classy, conservative styles to bold, eye-catching ensembles, these designs can bring out your inner-fashionista! Proudly handmade in India, Sulu Collection fuses traditional eastern styling with western fashion elements for a unique look that is both exotic and graceful.
Owner Sulu Grant was raised in India and, after receiving a degree in electrical engineering from Cornell University and an MBA from Harvard Business School, built a remarkable career but always had a passion for design and women’s fashion. The result is this comfy, beautiful clothes!
Thanks, Sulu! I am definitely feeling Spring Break ready!!