by Annika Jorgensen

I am his mother (from Sweden) and he has an American father, Marcy. We have two daughters Amanda and Johanna, who are both older than Nicki. We were divorced before Nicki turned ill and his father lives in the States. When we were married, I lived in the States for 10 years. So my connection to the States is strong.

Nicki was 8 when diagnosed with ALD. He never had a bone marrow transplant, but we came to Minneapolis for a consultation and were seen by Dr. Charles Peters in 2000. Nicki lived 6 years with the disease and he passed away in 2006.

Nicki was good at sports, preferably soccer. He loved scary things and playing (nice) pranks on everyone. He loved Pokémon and pirates.

He loved running outdoors and he knew very well that it had to be 15 degrees celsius before he could hang up his winter coat.

He loved to ride his bike and he lived a full life with high quality living to his last breath. For 5 years out of 6, he woke up with a scream of joy and excitement over what kind of fun mischiefs he could do this day together with his caretakers.

We communicated, everyone around him, and he was the boss and we were his humble servants. We “spoke” to his last breath.

Nicki was highly intelligent and nothing could be swept under the rug. He wanted to know it all and take part. He was a big person in a small body.

He helped so many people, you’d think it was the other way around, but no.

He affected so many people with his smile and his way of taking part in everything on his own terms.

He was something else.

And he lives on so many peoples hearts.

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