Why The Daileys Care Walk: Thalassemia Doesn’t Define You
February 16, 2016 – Throughout this Care Walk season, we will be highlighting stories of some of the amazing people whose efforts make this event a success for the Cooley’s Anemia Foundation and all the patients we serve. With so many Care Walks taking place on the same day, we hope that these stories will invite us all in for a glimpse of the fun and thalassemia awareness happening around the country.
The Dailey Family: From Transnational Adoption to Care Walking for a Cure
This is the second year the Dailey family will be Care Walking in Grove City, Pennsylvania to support patients with thalassemia across the country. Jamie and Matthew Dailey are parents to six amazing children: Matthew, aka Mattie, 26, twins Dean and Donovan, 24, Serenity, 12, Betty June, 8, and Belle, 4. All three of the Dailey girls are adopted from different regions in China. The Dailey family adopted Serenity in 2004, Betty June in 2014, and Belle in 2013. Belle has thalassemia major, or Cooley’s anemia, and Beffy June has Hemoglobin H-Constant Spring. You can read more about the Daileys’ adoption journey in Jamie’s book, Blood Sisters: A Tale of Adoption, Thalassemia, Sisterhood and Miracles available on Amazon.
You held your very first Care Walk last year and it was so successful. What is the inspiration behind your Care Walk?
Why do parents do anything they do? Our biggest inspiration for the Care Walk is our youngest daughters Betty June and Belle. These two girls are crazy brave and a constant inspiration to be better versions of ourselves. We call ourselves Team Dailey because our whole family is behind them. Thalassemia is their diagnosis but they aren’t alone.
Your family adopted all three of your incredible daughters. What would you tell a family considering adoption of a child with thalassemia?
Adoption is a wonderful thing. In the US, thalassemia is serious enough, but in some other countries thalassemia is a slow death sentence for orphans. Unavailability of proper chelation, chronic blood shortage, and lack of financial resources all stack the deck against them.
If you are adopting a child with thalassemia, things like insurance and location of medical care come into play. I see so many moms on our Facebook group for adoptive thal parents that have to struggle with doctors that don’t have a proper understanding of thalassemia and don’t communicate with doctors from Thalassemia Centers or that have to endure ongoing fights with insurance companies to get their meds covered. I coined the phrase “ThalThug” to describe how we have to aggressively advocate on behalf of our children. Between medical care, insurance and day to day life, we all have our ThalThug moments!
Personally, we are blessed to have a remarkable hematology team to care for our girls between Children’s Hospital of Pittsburgh and Children’s Hospital of Philadelphia.
If you decide to adopt a child with thalassemia, there are lots of resources available. Cooley’s Anemia Foundation has been a tremendous resource. From providing letters to expedite medical matters to the yearly conferences, CAF is right there with us.
What is special about your Care Walk?
We live in a small town, population less than 10,000. Our Care Walk reflected that, just the 5 of us. So we suited up and set out to walk up one side of the main street and down the other. Our goal was to spread awareness in our tiny town. We took pictures to post on social media and spoke to many residents about what thalassemia is since many had never heard of it. You will be able to tell from our pictures we had great fun!
What would you like the world to know about thalassemia?
Thalassemia is something you have, not something you are. It doesn’t define you.
If you’re not involved in a Care Walk yet, you can register yourself at http://bit.ly/carewalk2018.