Jakob, 38, Lives with Half a Brain: "Everyday Life Works Well"

Jakob lives with half a brain – supported by his assistance dog Alice: "We are a great team, she and I."

Today, approximately two to five children in Sweden are born with Sturge-Weber syndrome each year, according to the National Board of Health and Welfare. This often results in a port-wine stain on the face and severe seizures and epilepsy, as the vascular changes also affect the brain.

Jakob Fichtelius is one of those born with the condition, and at six months old, it was decided that half of his brain would be surgically removed.

– Otherwise, I wouldn't have survived, says Jakob.

Today, Jakob is completely free from both epilepsy and seizures.

After the surgery, however, he experienced paralysis on his right side and loss of visual fields, which means he has poorer balance and currently cannot obtain a driver's license.

– But I don't know any different. I think everyday life works well anyway. But of course, I would rather have my missing functions, says Jakob.

Challenges in Everyday Life – Living with a Rare Diagnosis

For Jakob, living with a rare diagnosis involves many challenges. The struggle against authorities and healthcare takes a lot of energy.

– It takes a toll on you to be opposed by society, you fall between the cracks all the time, he says.

Jakob feels he must find out what rights he has, and that support varies depending on where in the country you live.

– It's interesting that you get one thing 10 miles from here. Then you have to finance it yourself, he says.

Finances are often strained, and Jakob is forced to live on a very low income. He says it's difficult to enter the job market. Today, Jakob has 4,500 kronor a month to live on after paying all the bills.

– I don't have much money. My family steps in and pays for things, he says.

Today, Jakob lives in Uppsala, has an internship through the municipality at a nursing home, and he is also studying healthcare and nursing at adult education.

Supported by Assistance Dog Alice

Jakob receives invaluable support in everyday life from his assistance dog Alice.

When he got Alice, he decided to train her as an assistance dog, something made possible thanks to contributions from the Church of Sweden. Jakob says the training cost around 50,000 kronor, and without the grant and financial help from his parents, it wouldn't have been possible.

– I would never afford it if my mother and father couldn't step in and pay, he says.

Alice helps Jakob in many ways. Among other things, she licks his hand to stimulate blood circulation, picks up his wallet and keys, and helps him reduce loneliness by getting him out for walks.

– It's great fun. We are a great team, she and I, says Jakob.

On one occasion, Alice alerted when a pot boiled over on the stove – and if Jakob were to collapse in the forest, she can fetch help, he says.

– She means a lot to me. I break isolation and get out, so it's good.

Despite the support from Alice, there are challenges. There is no legislation guaranteeing that assistance dogs can accompany everywhere, which means Jakob often has to explain what an assistance dog does and why he needs to have her with him. Sometimes she is allowed to accompany him, and sometimes not.

– It's troublesome to have to discuss it every time, he says.

– Many assume you're doing something wrong, and it's a bit sad.

Dreams for the Future

Jakob dreams of getting a job and starting a family. He hopes to travel around and lecture on rare diagnoses to increase understanding.

– I hope I could get such a job to make it better for people with rare diagnoses.

His openness has received a great response on social media. In a Facebook post, for example, he has received both negative and positive reactions.

– People have said you look terrible, he says.

But he has also heard from parents of children with the same disease that they initially thought their children wouldn't survive, but Jakob's story has given them hope and strength.

– I just think it's fun. You make new contacts and feel appreciated for what you do from others.