Sunday, October 7, 2012

10 Years & Full of Life

Last month, we celebrated Mailyna's 10th birthday!  I really wish I started blogging back when I first got pregnant... it would've been amazing to have all of her previous trials & tribulations documented.  Sigh.  At least I'm (sorta) on it now.  I've been meaning to get back on & do a catch up session, but life is busy & it just doesn't happen the way you plan.  Yesterday we participated in the 4th Annual Thalassemia Conference at Oakland Children's Hospital.  It gave me the bump I needed to fire up my blogger app! While there was a great amount of education and information, the most valuable aspect of the conference was meeting the families that are living with the blood disorder.  Hearing their stories and picking their brains was a huge opportunity.   One of the reasons I started this blog was because there is so little correspondence within the Thal Community, but it hits a decent amount of lives.  Hearing personal stories is so different from a doctor telling me about something they heard about a family & blahblahblah.  The other big point was that families become the absolute experts as they advocate for their children, and while I thought I was informed, I learned A LOT yesterday. 

The myth that foods high in iron should be avoided was clarified. The amount of iron consumed & stored is significantly low from food. Majority of the iron overload comes from the blood transfusions, NOT food! Combined with natural chelators, such as black tea, a occasional steak or spinach is perfectly fine! Also, when eating foods high in iron, avoid consuming anything rich in vitamin C. Extra tip for those that NEED iron, eat your steak & beans with some bell peppers & kale :)

There was someone who personally experienced stomach issues due to taking Exjade; a family that has 2 childen that were born with Beta Thal Major and BOTH of those amazing children went through the process of bone marrow transplants and have BEATEN it.  My heart goes out to them and I commend their persistence and knowledge! We also met a resilient young lady that showed so much determination to live her life on her own terms, not the diseases. It was seriously so inspiring!

I have renewed faith that this isn't it. My heart is full of hope that we can use a non-related match for a bone marrow transplant to rid our lives of beta thal major! I still have to speak with her main physicians to pick their brains, but the other part of me wants everyone I know to get tested this very second to see if you're an HLA match! Pretty crazy huh?! So when that moment comes, believe me when. I say I'll be organizing a HUGE drive :)

Mailyna's main advocate,