I am the mother of two girls who both have Classic Galactosemia. The four of us happily live in Portland, Oregon. I am originally from Germany and we travel to Europe regularly. We have been living in Portland since 2002 and both girls are native Oregonians :). I hope you enjoy this little blog about our life, fun times sometimes not so fun times, and hopefully learn a little about what it is like to live with Classic Galactosemia.
I am an advocate for Newborn Screening because without the test our life would not be the way it is now. Newborn Screening saved the lives of both of our children. Learn more about Newborn Screening at www.savebabies.org. A wonderful organization of all parents advocating for Newborn Screening and educating the public about it.
I always love to receive feedback. Please feel free to leave comments on the posts, or you may also contact me at germanpdx at gmail.com.
Please note that I reserve the sole right on publication of any comments. Thank you!
7 comments:
Because of newborn screening, I've recently found out that my daughter is borderline galactosemia. We are waiting for follow-up tests to determine whether it is classical or duarte. I'm happy that I found your blog, and look forward to trying many of the recipes.
Congratulations on the birth of your precious baby girl :) - Please let me know if we can help answer any questions. - Beate
HI,
I'm so happy to find your blog. My sister gave birth to her first baby girl. She born premature, after 2 months at intensive care, doctors mention the possibility of Galactosemia Diagnosis. Now we're struggling to find a specialist here in Puerto Rico. If by any chance you have a recommendation, It will be bless...
Dear Mayra -
I am so glad to hear that. Congratulations on the birth of your baby niece. I am sure she is beautiful. It appears that there are two metabolic clinics in San Juan. You can find more information and contact info here http://www.mjn.com/app/iwp/hcp2/content2.do?dm=mj&id=/HCP_Home2/ProductInformation/hcpProducts/hcpMetabolics/PUERTO_RICO&iwpst=HCP&ls=0&csred=1&r=3521462556
Please feel free to email me at germandx (at) gmail . com at any time. - Beate
@Lisa - thank you for your comment. I did send you an email not sure if you rcvd it. May have hit your spam folder. from germanpdx at gmail Pls feel free to contact me any time :)
Here I thought I was the only mother in this world that had two Classic Galactosemic children :). Love your blog and your recipes. I have three boys, two of which have CG. I just gave birth to my second CG baby on Easter Sunday. He is such a blessing, as are all my children. I would
Love to chat and share stories if your ever free:).
Congratulations on the birth of your baby boy, Sugar Magnolia :) - I am so app to ear that you like my blog :) - I would love to connect with you. You can email me germanpdx (at) gmail . com, connect via FB -> The Not So Cheesy Kitchen, and/or Twitter @beatepdx. I look forward to meet you :) ~ Bea
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