"I have a condition called Beta Thalassemia. Sometimes its hard to tell other people about my condition. Sometimes I think that other people might think of me differently then other kids. I think my friends wouldn't be my friends if I told them about my Beta Thalassemia. Sometimes when I think of that I cry, but then I think of happy things. Just like when I went to Knott's Berry Farm in L.A. with my dad and my sister. Also when I'm sad I look at my favorite pictures I took before when I was little like my baby sister who is 3 years old. To me I think that with my Beta Thalassemia I can't do so much things like soccer, karate, football, and volleyball."
The heartbreaking thing is that we try to keep her activities as normal as possible & but there are limitations. She has a port-o-cath in her chest that does need to be protected, because its connected to one of her main arteries. I've never tried to hide her blood disorder from anyone & freely open up about her condition to anyone who inquires because its something that is a part of her life & ours. Everyone that we've ever spoken to has been supportive & loving, which is a complete blessing!
Shes a strong kid & deep down shes got all these insecurities. And to be honest, the odds are stacked. She's a 9 yr old girl, that has divorced parents, and has a genetic disorder. Every aspect adds separate difficulties. She isn't the average kid... she's better! She has at least 4 different Christmases to look forward to... 2 sets of parents, 4 grandparents, a gazillion other family members to cheer her on in whatever she does! Life is full of ups & downs, but Mailyna is truly blessed to have the support system she does & to be living in a time and place where she is able to receive the proper care to manage & maintain her life.
Lets give her some reassurance & encouragement folks! Please feel free to subscribe to her blog & leave tons of comments! Thank you again for the support!