This is the first post of - hopefully - many others; I want you all to meet people around the world who are living with Classic Galactosemia. Ten years ago, Classic Galactosemia was something I had never heard about and when Alena was diagnosed it was obscure. And yes, I wanted to know what with this disorder was like. Once we learned about the treatment {=diet} and the regional treatment differences it got even more confusing. But yes, you are right this is not what this post is about...
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| Karin & Eberhard |
We first met Lisa and her family in the summer of 2008. It was the girl's first trip to Alto Adige {Northern Italy} and I had communicated ahead of time with Lisa's Mom, to figure out "safe" foods etc. You can say we were still novices as both girls were very young. Karin and Eberhard {Lisa's parents} taught us that you must keep "unsafe" foods in the house, that the kids must learn that not everything at the table is safe for them to eat, and that it is okay to order "unsafe" food for yourself because the kids need to learn that not every food can be shared. It was the best lesson learned and I will always be thankful to our friends; Karin and Eberhard know because both Lisa and Philip have Classic Galactosemia. Since then we have met up again once in 2010 for a brief visit in Alto Adige, and again this year when we were able to spend quite a bit of time together. It is at that time when Karin told me Lisa's story.
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| Ron, Lisa, Eberhard, Philip, Karin, Mia Rose, me, and Alena |
Lisa was born in Brixen; she was jaundiced when released from the hospital and the parents were told not to worry "it happens from time to time, but she will get better". She did not get better and the parents brought Lisa back to the hospital to be evaluated "she is fine" was the word and they were sent home again. The next day, having a gut feeling that something was just not right, Karin and Eberhard returnd to the clinic. A pediatrician recognized the life threatening situation and put Lisa her immediately in the PICU. They had come back to the hospital just in time; Lisa recovered and soon the pediatrician had Karin nurse Lisa again. Lisa got sick again and it was at that time that her newborn screen test results came back showing a positive for "Galactosemia". Lisa was immediately put on soy formula; she was a patient at the metabolic clinic in Innsbruck and follows the same diet our girls are following. You know, avoid all dairy except for aged cheeses such as Parmesiano Regiano, Gruyere, Emmenthaler, etc. both Lisa as well as Philip also eat all fruits, and vegetables.
Today, Lisa is a beautiful teenager - let me tell you both of our children absolutely love her as she spent so much time playing with them. When we were visiting Karin made Tiramisu for the cow eating folk and Lisa made a "safe" Tiramisu for the kids. It was delicious and it is obvious that cooking as well baking is one of Lisa's hobbies.
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| Lisa showing off Galactosemia safe Tiramisu |
In her free time away from school and homework Lisa likes to go swimming and skiing. She loves to spend time with her friends and every so often they all go out for ice cream at one of the cafes. "I always ask whether it is is safe and eat sorbet" she says; Lisa also likes to read and listen to music.
When she grows up she wants to pursue a degree in early childhood education. As I can attest she is great with young children.
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