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