Armer Foundation Gala

In 2020, when we knew we had A LOT of money to fundraise to save Keira’s life, Dave’s Aunt Malinda suggested her friend Jennifer’s non-profit as a supplement to fundraising on GoFundMe. I had never heard of The Armer Foundation for Kids before and was a little skeptical at first but after some research and reassurance, accepted the additional help.

Not only did they create a fundraising page on their website (which took ZERO fees out for processing, like GoFundMe does) but they made flyers, t-shirts, told everyone about us and even held a yard sale in the middle of the scorching AZ summer at our house. And they are a big part of the reason why we made it to Italy.

After going through this experience and seeing all they did for us I knew I had to help. When we got back from Italy I told Jennifer I wanted in. I wanted to do whatever I could to help other families like ours. And I’m honored to say that ever since then I’ve been a board member.

Through my PR agency, I help the other families they are fundraising for to get on TV, get their stories in the paper and raise awareness to increase fundraising for their choldren. It has been amazing to give back in this way when I know that insurance doesn’t cover it all.

And another way is attending their annual gala – their biggest fundraiser of the year which just took place on August 6th at Ashley Castle in Chandler, Arizona.

It was an incredible evening, emceed by Tess Rafols of 3TV, that showcased some wonderful musical talent, an amazing silent auction and the heart-wrenching stories of the Armer Foundation families who are in need of financial support for their children.

To learn about these children and their stories, and donate, visit www.armerfoundation.org/armerkids.

Jennifer was also kind enough to mention our family at the gala and how that yard sale for Keira inspired her to open their thrift store (located at 9830 S 51st St Suite A128, Phoenix, AZ 85044). For any items you have to donate, please consider taking them there and helping these families.

For all other info, visit www.armerfoundation.org, or connect with them on Facebook.

Dave and I at the Armer Foundation gala.

2022 Cupcake Gala

It’s been so busy this past month that I haven’t had a chance to update the blog regularly but I can’t not mention our trip to Philadelphia, Pennsylvania last month to attend The Calliope Joy Foundation’s annual Cupcake Gala. One of the special guests in attendance? Our very own Keira.

The Calliope Joy Foundation was founded by Maria Kefalas and Pat Carr, parents of Calliope Joy Carr who just passed away earlier this year – defeating the odds of MLD by making it to age 12 rather than the expected average age of 6. Her journey inspired Maria and Pat to not only do all they could to help their own daughter but to also help make a difference for other families facing this devastating disease.

This all started by selling cupcakes to fundraise, hence the name of their biggest annual fundriaser, the Cupcake Gala at Loews Philadelphia Hotel.

We were honored to be in attendance, not only for Keira to be a special guest but more so to finally meet Maria. It was Maria who informed me on June 20, 2020 (the day after we got Keira’s diagnosis) that there was actually a treatment option to give her a potentially normal life but that we would need to move to Italy to get it. Within 24 hours she introduced us to the team of doctors at Ospedale San Raffaele and our lives were changed forever.

To say we are grateful for her (and her family) is an understatement. She is one of our many angels on earth helping us through this unreal journey.

While there, we also had the chance to meet one of the other special guests, Celia Grace, a little girl from Alabama who we helped get this very same treatment right here in the US. Due to our connection with Blue Cross Blue Shield of Arizona, they were able to work with the Alabama team to get this treatment approved after the Hamlett family had already received two denials. To see Keira amd Celia Grace running around playing with each other like “normal” kids their age was amazing.

Here are a few photos from the Gala:

Calliope’s nurse Peggy, Maria Kefalas, Kendra, Keira and Dave

And here are a few photos from our time sight seeing in Philadelphia:

It was a wonderful trip and we look forward to returning next year!

For more details on The Calliope Joy Foundation amd their annual Cupcake Gala, visit www.thecalliopejoyfoundation.org.

P.s. Maria is also the author of Harnessing Grief, where she shares her own story of how she turned her grief over Cal’s diagnosis into her superpower. That super power? Cal’s legacy and everything the Kefalas-Carr family does for families like ours through the Calliope Joy Foundation and CureMLD.com.

Breaking Records at Wish Ball

A few months ago, we were approached by Make-A-Wish Arizona to see if we would interested in sharing Livvy’s wish (her swingset) in a video that would be played at their biggest fundraiser of the year, the Wish Ball.

If I’ve learned anything from this journey so far it’s that sharing our story can only help others. We said yes, filmed it in our backyard with the girls and below is the final product which was played during live auction and Fund-A-Wish portion of the evening at Wish Ball this Saturday.

After this moment, records were broken. The Wish Ball raised more money that evening than they ever have before. And we are so honored to say that Livvy was a part of that. That her story is now helping other children get their wishes granted.

Take a moment to watch it below and if you feel so inclined help Livvy give more kids their wishes by donating to Make a Wish Foundation of Arizona here.

Thank you Make-A-Wish Arizona for not only giving Livvy her wish, but also giving her sisters (and us) memories with that will last our lifetime.

More photos from the evening below:

Thank You is an Understatement

On June 19, 2020 our world was shaken a second time when we found out our youngest daughter Keira also had the same gene mutations that caused MLD. Thanks to being involved in the MLD Foundation‘s Family Support Group, we met Maria Kefalas of CureMLD.com who immediately informed us there was another option for Keira – in the form of gene therapy in Milan, Italy.

The potential cost? Hundreds of thousands. On top of moving our family to Italy for 5 months for this potentially life saving treatment. Another hurdle? Having our middle daughter Olivia’s weekly treatments in her clinical trial moved to a European site. The road head seemed daunting to say the least.

My sister-in-law Nina immediately created a GoFundMe page and another in-law, Aunt Malinda, introduced us to Jennifer Armer of the Armer Foundation, who could help us raise funds via tax deductible donations. Then off we went. Spreading the word far and wide of our family’s story.

Suddenly, not one or ten or one hundred but THOUSANDS of people – family, friends and strangers alike – came together amidst one of the hardest times in today’s world, to support our family. My colleagues also reached out to their networks, having media outlets from the Independent Newspapers, Mom.com and FOX 10 to 3TV and People Magazine sharing our family’s tragic story.

“Thank You” does not do justice to the appreciation we have for each and every one of you.

“Thank You” is an understatement.

I wish I could list every single person who helped us here. But that would make this post quite lengthy and many wished to remain anonymous. So to sum it:

To our family: Many of you we haven’t seen in so long because of the pandemic. A few of you have been right by our side, day-in and day-out, as we navigate the world of MLD with Olivia and Keira. No matter the circumstances, we would not be able to care for our girls or make this journey to Italy without your support. You have provided life to our children, love for our children, happiness for our children and now…a second chance for our Keira. A second chance at life, love and a normal future. We love you so much and can’t wait for the many memories to come with our girls!

To our Friends: You have rallied like we never expected. From bass fishing tournaments in Yuma and t-shirt fundraisers online to proceeds of wine sales, a “shoulder” to lean on or someone to share feelings with…we are speechless at the kindness, generosity and loyalty that comes from being part of your circle. Thank you!!

To Those We Have Never Met: You have left us in awe and restored our faith in humankind. KIND being the key word. The smallest donations bring us to tears as much as the large donations. We are all struggling during this pandemic and the fact that many still choose to help and give back means the world. It may very well save the life of our daughter and we are forever grateful.

Donations aside, the LOVE, support, positivity, prayers and virtual hugs sent our way mean the world. Thank you is truly an understatement and we want you to know how grateful we are for each and every one of you.

With love and endless thanks,

The Riley Family