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.
Middle sister Johanna visiting in hospital. Nicki in bed Family picture at hospital From left oldest sister Amanda, Mom Annika, Nicki himself, Older sister Johanna and American father Marcy. Nicki in hospital, oldest sister Amanda also in hospital, but different ward, she’s just one day after surgery and came to see her brother in a wheel chair. Nicki hanging out in hospital, using his famous look, sayin What? I wanna know Nicki in hospital and his caretaker Leo Nicki at home sitting a bit on his bed dangling his feet, Caretakers Mike and Quidy. Nicki at his massage appointment Nicki in hospital with caretaker Christofer Nicki at home in bed with oldest sister Amanda who’s reading a story to him Nicki getting himself a ride in his new speedier his grandfather built, here with his caretaker Mike. Nicki at home laying out in the sun in our garden, with his caretaker Christofer Nicki hanging out in his room at home with his caretakers Freddy and Mike Nicki in the Taxi with his caretaker Kiwi Nicki and his great uncle Per who is probably the funniest guy ever. Nicki showing off in his new wheelchair Nicki at home in bed babysitting newborn Mea (The daughter of his caretaker Freddy) Nicki out and about in the surroundings of home with his caretaker Rune Nicki, at his birthday party His mom Annika (me) His sister Johanna, his caregiver Freddy with family. Nicki out and about the neighborhood with his caretakers Freddy and Joakim. Nicki getting ready for surgery, Traechonomy, Mom Annika going in with him.
