Ingrid’s Story | The challenges and hopes of living with a rare disease

I sometimes wish that Sara’s disease
was more common than it is. The disease is so rare it’s
difficult to find information about it. And there’s no recipe for how
to treat her when she arrives at the hospital. I hope that in the future, there will be a way to treat… I understand that Sara can’t be cured, but that in the future we
can treat a fetus before it’s born. Or that we can find ways to
change genetics, before life begins. That way people won’t
have to be born with this diagnosis. She has a dignified life, yet the things she has to go through are so painful that I hope no one else has to experience them. To me it was important to write a blog about Sara. It was just to inform everyone
around us about what was going on. By writing on the blog we
could update everyone that wanted an update. Because I had so many thoughts and feelings. I wondered about so many things, felt so much. Writing it down became a way of ventilating for me. Sara is now 7 years old,
and that’s pretty amazing in itself. We take nothing for granted and
every day could be the very last. We have become very strong. We are very good at appreciating life here and now, The small things she can manage. They are tiny, but still… How proud she is, how proud her brother is, and how proud that makes us. That’s what’s important in life. Even if she only gets to live until she’s eight years, then at least she is to have eight great years. And especially if she grows up and lives a long life we do not want her to have a shielded and restricted life.