Raising Blood Brothers: A Florida Family’s Journey with Thalassemia and Adoption
November 3, 2017 – CAF is proud to celebrate National Adoption Month throughout the month of November. Our goals are to bring attention to the need for permanent families for children with thalassemia both in the U.S. and globally, to provide the greater community with resources and information on thalassemia adoption, and to share the stories and perspectives of adoptive families. CAF thanks the Cammilleri family for sharing their story with the community. We hope you are inspired by their journey!
Could you tell us a little about yourself and your family?
My husband Joe and I live in Florida along with our three blessings, our children Corbyn (9), Cai (8) and Callie (7). We met in pharmacy school and he is now a full time clinical pharmacist and I am a part-time retail pharmacist.
When did you decide that adoption was right for your family? What made you make this decision?
It’s a really long God-filled story, but I’ll try to keep it short! Joe and I discussed adopting when we were dating. We went on some medical mission trips where we were also able to spend some time in orphanages. This stirred several conversations of one day hoping to adopt. When our first born was diagnosed with thalassemia major, we were already pregnant with our daughter. We found out she did not have thalassemia when she was tested at birth. Managing our son’s disorder while also caring for an infant was very challenging. But still, we had this feeling that we were not done. We prayed about the path we should take to grow our family and we felt called to adopt a child living with thalassemia who otherwise may not be able to receive proper care.
We reached out to CAF who put us in touch with a group who listed waiting children’s files by disease severity through a special needs program. We soon learned that China had a severe blood shortage and children were suffering and not surviving as a result of not receiving the treatment they needed. When we saw our son’s face, we knew he was meant to be in our family. We began the steps to adopt him and he joined our crazy crew in 2013 at four years old!
How did you learn about thalassemia?
We learned about the depth of thalassemia when our son, Corbyn, was diagnosed as a baby. I was aware that I was a carrier of thalassemia (minor) but we did not know my husband was. We did genetic testing before we attempted to get pregnant and were told he was not a carrier. When we were trying to figure out Corbyn’s diagnosis, my husband was retested and was shown to, in fact, be a carrier as well. There is a 25% chance that two parents who carry the defective gene will have a child with thal major. Our two boys both have the major form of thalassemia, also known as Cooley’s anemia.
Tell us a bit about your road to adoption. How long was the process? What were some of the challenges you faced?
Our journey to our son was fairly quick! We went through a special needs program and children who have thalassemia are typically expedited because of their pressing need for transfusions to stay alive. From starting our research to having him in our arms was about 7 months! I was fortunate to join an adoption support group full of parents who helped me with paperwork and preparing for the road ahead.
Adoption comes with many obstacles, but anything that’s worth it does, right? For me, the first was waiting to go get our son. Not knowing if he was being loved on and his medical needs were being met was difficult for me. I cried a lot of tears praying he’d make it until we got to him.
When you’re pregnant, you are in control of making sure you are healthy and making the best decisions for your child. When you’re in the adoption paper chase, decisions about your child’s well-being are out of your control. Throw in a severe medical need, and it’s even scarier. Adoption was by far the worst “labor pains” I have ever experienced. The moment I had that boy in my arms (screaming albeit!) gave me the biggest sigh of mama relief. There are long term challenges like attachment, loss and trauma that will continue to come and go due to circumstances out of his control. The good news is that he will always have a family that loves him through everything, no matter what.
What were the biggest questions, concerns and fears you had about adopting a child with thalassemia?
For us, our biggest concern was expense. We already knew what it was like to parent a child with thalassemia. We knew this road would not be easy medically or emotionally. We also knew how costly caring for one child with thal was, so the costs of international adoption in addition to ongoing medical costs for two chronic blood disorders seemed overwhelming.
But we believed that God put this in our hearts and when He brings you to it, He will bring you through it! Other initial fears were that our adoptive son might have irreversible damage from not getting the treatment he needed, additional medical needs not listed in his file, and possible delays related to what he had gone through. Thankfully, none of these were deal breakers for us!
Parenting a child who has been through such loss can be hard. Saying the right things and making the right choices are fears, but the same issues come up with our biological children as well. We can just do the best we can with the knowledge we have and let all of our children know that they are meant to be in our family, are valued and we will do our best to keep them safe and know they are loved more than anything else in the world.
How did you find answers to your questions about adopting a child with thalassemia?
After we received approval from China to adopt Cai we joined an adoption group that was and continues to be a huge source of support. Since this disease is rare and we are spread out all over the country it’s wonderful that we are able to connect and help one another through social media. Since then, I also run a private Facebook group for people parenting thalassemic children. We are a small group, but we are tight knit.
What are the greatest joys of being an adoptive parent to a child with thalassemia? What are the biggest challenges?
Having a child with thal has completely changed our outlook on life as parents. We slowed down, we appreciate every single second. To be honest, my greatest joys are the same with my adoptive son as my biological children. My heart bursts with joy when I get to see his “firsts,” when he shares his day, snuggles me and tells me he loves me more than anything. The fact that I get to be his mom is one of my greatest joys. Adopting Cai has also brought me into a deeper relationship with Jesus. It’s made me realize how much He loves me (because He has adopted me!) and how all of His children are important to Him. It’s such a joy to have a front row seat to his miracles!
The biggest challenge for me is watching my thal babies go through really hard medical things and feeling helpless. Some days there is needle stick after needle stick. When they can’t get a vein, we don’t have a choice. They NEED a transfusion. There are procedures and sedation and the risks that are read out loud to you time after time. You sign the papers and you keep putting on a brave face for them like everything will be ok and it’s just “routine.” But your mama heart is crushed every time you hold them when they cry through the physical and emotional pain of thalassemia. I just wish I could take it away. But it is not going away. This is their life. And on the other side of that is THIS IS THEIR LIFE! We build thal into our routine. We go to school, we get labs, we play outside, we get a transfusion, we have dinner together and we get to live this lucky life with them. We take it one day at a time and we focus on our blessings. Thalassemia takes a huge toll on the entire family, but it is also a HUGE blessing. I believe our boys are stronger, more resilient, more caring and empathetic and will one day be world changers.
For me, advocating for their needs is another challenge. Fighting for your child to get the best care possible can be hard when you don’t always get to call the shots. Their hematologist may disagree on a certain path of care which can be hard when things are constantly changing. We make it a priority to educate ourselves on current treatments and share that with our medical team. We also try to stand beside their teachers in understanding their medical needs. And we can’t forget fighting with the insurance company to get necessary prior authorizations month after month. There are just so many areas to advocate! We are at a new point where we are trying to teach them to be their own advocates. It’s a tough gig.
CAF: How did you learn about Cooley’s Anemia Foundation, and what makes you support CAF?
When our oldest son Corbyn was diagnosed, we did our research and found CAF! They have truly been a light in our life. They have helped with finding specialists, being a constant source of support, financial assistance, and the list goes on.
Many people at CAF are not just contacts, they are friends. I cannot tell you what CAF has meant to our family, especially before social media when we felt very alone in this disease. We host a Care Walk every year to raise awareness of thalassemia and our goal is to fundraise for CAF to support the work they do for us and others living with thalassemia. They help fund major research and we are progressing rapidly in care because of their efforts. They are my go-to thal experts and, most importantly, they brought us to our son and I am forever grateful.
What advice do you have for individuals who would like to adopt a child with thalassemia?
If you already have a child with thalassemia, I would say that it is a huge blessing to have someone for them to go through this with. Having someone to complain to and support you who really gets it is priceless. When we first brought our son home from China, watching Corbyn do medical things first calmed him. If he could see his big brother do it, he could too! We dubbed our boys the blood brothers and it has truly strengthened their bond. No one else in the family will ever get what they go through on their level.
If you are contemplating adopting this special need and it’s new to you, don’t be scared! It’s overwhelming at first, but you will get in a groove and you have so much support now days. These children are worth it!
Some important logistics I believe you should look into before you pursue adopting a child with a chronic disease such as thalassemia are your insurance coverage options, the distance between where you live and a transfusion clinic/hospital, and your career flexibility. Things come up last minute with thal, transfusion schedules change and I believe it’s important to be in a job that supports and understands that. Also, you have to understand that your child could have other needs besides thalassemia. Multiple diagnoses are difficult to juggle, BUT AGAIN they are worth it and you wouldn’t think twice if your biological child was born with a special need. You’re a mom, you do it!
Is there anything else you would like to share with the community?
I just want to share that our own supportive community matters! I am so thankful for our thal community, but our community of family and friends supporting us day in and day out is so important, too.
We are extremely grateful when you hold our hands, celebrate our victories, listen to us cry and show up for us. I am continuously amazed at how great our friends are. Everyone who bring their kids to our annual Care Walks. Our friends who explain thalassemia to their children. Our family babysitter who helps us juggle appointments. And their teachers who provide an inclusive environment with their peers.
I also just cannot share about my brave boys without recognizing their supportive sister! Special needs siblings are, well, super special. Sister is always at their transfusions, long appointments, getting them drinks and helping them in any way she can.
In our home, adoption means love and thalassemia means life!
Check the CAF website throughout November for interviews with adoptive families, FAQ’s about adoption, and resources available to those going through the process of adopting a child. For more information, visit this link.