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Making the right care decision for your loved one can be a daunting task filled with stress, tension and pressure. There are so many assisted living, memory care, nursing, and other care options available in Phoenix Area - the terminology is often unfamiliar. Senior Care Authority® will streamline the process to make it easier for you to make an informed decision.
It can be comforting to have someone partner with you who is outside the emotional landscape of the family, doing research, talking to providers, organizing paperwork, or finding those “needle in a haystack” resources. Whatever the need, we can customize our services for your family or provide you with vetted referral sources.
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KEEP ALL PASSENGERS HEALTHY AND SAFE
With NuVinAir, the health of you and your passengers is priority one. That’s why we offer a patented sanitizing process that quickly and safely cleans the air inside your vehicle, removing contaminants, odor and pollutants from areas that sprays and wipes simply cannot. Also if you are in the market for a new, pre-owned vehicle, make sure it’s been NuVinAir sanitized and the interior restored to pinnacle cleanliness! Global
Community Local Family Fundraises for a Chance to Save Their Daughter’s Life
F
ive hundred thousand dollars and five months in Italy. That’s the Riley family’s only hope for saving their 5-month-old daughter Keira, who along with her 2-year-old sister Olivia, suffers from a form of Metachromatic Leukodystrophy (MLD) so rare that they don’t even search for the mutation in today’s genetic testing.
The family needs to raise money for treatment. Tax deductible donations may be made at armerfoundation.org/keira-and-olivia. The family also has a GoFundMe page at gofundme.com/f/help-save-keiraslife-from-mld. MLD is an extremely rare, fatal brain disease that destroys the protective fatty layer (myelin sheath) surrounding the nerves in the central nervous system. It aggressively takes away motor function and other abilities when symptoms show early in life. Most children are not expected to live past 4 to 6 years old. Olivia’s siblings were immediately tested while Olivia began the only ongoing clinical trial for MLD patients. The treatment is not curative and cannot reverse damage already done, but seeks to slow the rapid progression of the disease while protecting and preserving quality of life. “Olivia has lost her vocabulary, cannot pronounce
most words and experiences some form of pain from moderate to severe on a daily basis,” says Kendra. “She still has a lot of smiles and her big sister Eva and baby sister Keira always make her light up.” This summer, the Rileys learned Keira also has both mutated copies of the gene and has been diagnosed with MLD. The Rileys turned to CureMLD.com and The MLD Foundation, and learned of a cutting-edge MLD gene therapy treatment only available in Milan, Italy, and it may not be covered by health insurance. Since beginning the treatment in 2010, the Institute in Italy has treated 29 patients from around the world, 26 of which are still alive. Currently asymptomatic, Keira is eligible for the therapy but not as part of the clinical trial, which means the Riley family will have to pay for her treatment out of pocket if it is not approved by insurance. The investment for treatment, lodging, travel and living expenses during treatment is estimated at $500,000. “We only have one hope left; $500,000 sounds impossible. It’s overwhelming, but if 100,000 people who hear our story are compelled to donate just $5 each – we’ll have the opportunity to save our daughter Keira’s life,” Kendra says.
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For more information visit: www.nuvinairaz.com/find-nuvinair Call us: (480) 247-1798 or Email us: at info@nuvinairaz.com
3333 N 89th St, Scottsdale www.markkia.com
8 • August 2020 • THE SCOTTSDALE STANDARD
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