Letter from a swedish mum to UDNI's Newsletter

I am a proud mom of four amazing children. My youngest daughter Liv is now two and a half years old and suffers from an undiagnosed braindisease.  

I understood early that our Liv was different from other babies, but the health care did not agree with me. Not until she was about ten months old, her doctor realized something was wrong. By then I had lived for almost a year with a constant worry that nobody took seriously. I almost thought I was crazy. But that was one and a half years ago, and we are not wiser now than we were then.

Liv is very late in her development. She is like an 8 months old baby instead of that, soon to be three years old girl, that she is. Liv completely lacks speech and ability to communicate. She has epilepsy and pretty bad ataxia. Liv has many behavioral disorders and suffers from sleep disturbance. But despite her epilepsy Liv is healthy, according to all tests and examinations. When she is sleeping and I look at her beautiful little face, her ruffled blonde hair and I listen to her calm breathing and light snoring, I just can’t understand how she can be that sick.

I´ve been waiting for Liv to get a diagnose for more than two and a half years now. But nothing happens. Nobody has come up with as much as a suggestion, despite all the investigations and examinations my little girl has endured. The last year Liv has become worse. She no longer is as energetic as she used to be. She doesn’t laugh as much anymore. I find it hard to breath when I think about it. We must do something! Give her a medicine or do an operation! Make her better, not worse! But how do we know what she needs when we do not even know why she is sick?

In a few weeks we are taking Liv to the Undiagnosed Diseases Program in USA, to meet Dr William Gahl and his amazing team. Dr Gahl is specialized in undiagnosed diseases, and Helene Cederroth, who is founder of the Wilhelm Foundation has helped us make this possible. It is an incredible opportunity and we can´t wait to go! Maybe our journey as parents to an undiagnosed child is coming to an end. Words can´t describe how thankful I am for this chance.

I would like to end this letter by sharing something that has given so much joy to our family. As a parent of a sick child, you are prepared to try anything that may help your child. Since Liv do not communicate or socialize we wondered if maybe a dog could help her. We therefore applied for funds from the Wilhelm Foundations Silver Lining Program, so that we could buy a puppy. The Wilhelm Foundation approved our application and about six months ago Emma moved in with us. Emma is a beautiful Golden Retriever, who has the biggest heart and the kindest eyes I've ever seen in a dog. Liv loves Emma! Liv sometimes gets very upset and nothing we do can help her to calm down. When this happens, Emma comes to rescue! Gently she bites and licks Liv’s ears and feet. Emma lays down next to Liv and lets her run her little fingers thruher thick, white fur. In just a few minutes, this wonderful dog has made Liv go from tears to laughter. Emma is the most loveable assistant a family could ever have!