Welcome to The Adventures of Galacto Girl

Our daughter, Francesca, was diagnosed with Galactosemia three days after she was born. It is a rare genetic metabolic disorder, and by rare I mean 1 in 40-70,000. We owe her early (and potentially life saving) diagnosis to the newborn screen they do in the hospital.

After doing a little research and reading articles, blogs and personal stories I knew I would soon be joining the ranks. Francesca Jo (FJ) is now four months old and she is perfect. I still have a lot to learn and know there is potentially a long, difficult road ahead of us but I am learning to enjoy every day for what it is.

Early on I told myself I would allow time to grieve for this scary diagnosis and uncertain future but then I would spend my energy being thankful for every day instead of worried about what may be around the corner. Because really, what's the point of worrying about

something that might never happen. And if it does, it won't help to have wasted days, months or years worrying about it. I do pretty good, but still have some hard days. I just want my baby girl to have the best life possible.

So, I will be keeping a blog about our Galacto Girl.  Maybe it will help someone else and I know it will help me. You're invited on this crazy journey with us. The good, the bad, the ugly. It will be the Adventures of Galacto Girl. Sounds like a super hero, right? Well, after the fight she put up during her first week of life, she could be one. All we need is a cape.

Learn more about Galactosemia: http://galactosemia.org/Understanding_Galactosemia.php