A sibling for our angel Signe

As many of you know, our daughter Signe was diagnosed with a serious and rare genetic condition, Alagille syndrome (ALGS), shortly after she was born in July last year. We later learned that she had inherited this disease from Kajsa. Because Kajsa carries the gene, there is a 50% chance that our future children would be affected.

ALGS varies widely in terms of its severity. Some people, like Kajsa, can go through life unaware they have it, while others struggle with heart problems, need a liver transplant, or don't even survive their first few years of life. Significantly, there is no consistency among affected individuals within the same family. A person with mild Alagille could have a child who is severly impacted, and vice versa.

The news of Signe's and Kajsa's diagnoses has weighed heavily on us. We have always imagined having more than one child, but no longer think we can risk having additional children through conventional means. 
While we have considered a number of options we, in consultation with our doctors, decided that the best solution for us is to pursue in vitro fertilization along with a procedure that allows for pregestational diagnosis. This will essentially eliminate the chance that future children will carry the Alagille gene. This was no easy decision to make, however, because our health insurance does not cover the considerable cost of these procedures (ca $35.000), leaving us to pay for them ourselves.

This is a voluntary burden, but it is one we never planned for. We are grateful for any and all help.  Any funds exceeding the treatment cost will be donated to research on Alagille's syndrome.