Our beautiful baby girl Emma, was born on March 20th 2007 with Classic Galactosemia. My wife and I were a very young couple, just starting our lives together when we welcomed our beautiful baby into the world. Like many first time parents, we quickly realized we were in over our heads.
However, we knew after a few days that something wasn’t right. Emma had lost a lot of weight, over -2.5lbs, was having a hard time keeping her milk down, wasn’t taking to breast feeding and was having an unusual high amount of dirty diapers. After about 5 days of regular milk (breast and formula) we made the switch to Soy milk to see if that would help with her weight and side effects.
The next day, the phone rings. It was our doctor, notifying us that our new born heel prick screening came back positive that our beautiful baby girl has Galactosemia, a very rare genetic disorder. The doctor informed us that we needed to get her seen by a geneticist ASAP and to cease giving her any milk products at once. My wife and I looked at each other in puzzlement. What is Galactosemia? Geneticist? Come to find out, if we would have given her one more feeding of milk she may not have survived!
Galactosemia is a genetic disorders that results from the compromised ability to metabolize the sugar galactose; the term “galactosemia” literally means too much galactose in the blood. Even with early diagnosis and careful restriction of lactose/galactose from the diet, patients with galactosemia remain at increased risk for long-term complications that include speech and language, fine and gross motor skill delays, cataracts, neurological impairments, specific learning or cognitive and behavioral disabilities, in women premature ovarian failure and if not caught early enough at birth, even death.
Unlike many other more common diseases, Galactosemia is what is considered an “orphans disease”. Because of its rarity, little to no research is done aside from what is raised through the foundation, dedicated parents/ family members and the doctors that spend their lives searching daily for an understanding and ultimate cure.
Why we are fundraising
Emma is now 9 years old and entering into 4th grade. While we have strictly followed the diet over the years, we are noticing some of the complications associated with Galactosemia. Emma has endured a life of studies, finger pricks, blood draws, tests and hours and thousands of dollars spent on additional tutoring to help her overcome learning challenges. She notices she is different and doesn’t get things as quickly as other students in her grade.
As Emma has matured, she has decided that she wants to also help raise money for a cure to Galactosemia and to continue to work hard to overcome her personal fight associated with this disorder. Emma, every chance she gets gathers up our loose change and puts it into the “Galactosemia jar” to donate. She has lemonade stands outdoors and sells snacks and awareness items to also help contribute. Emma is a beautiful soul, and an extremely hard worker and wants to make a difference!
100% of the money raised for Emma’s cure will go towards Galactosemia foundation!
Please open your hearts and help to make a huge difference in the research of Galactosemia and assist Emma in overcoming the personal effects of this rare condition. I can assure you this beautiful little girl will help pay it forward a thousand fold.
God Bless! You can learn more about Galactosemia and the foundation here.
Richard and Lauren Ahlgren
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