Family Stories - Markus

'Markus was born 25 June 2002 with severe breathing problems. He needed to be ventilated with 100 % oxygen. When we got the diagnosis, the Norwegian doctors said that he probably would not survive very long, which was very hard to accept, especially after seeing his beautiful smile .... as long he got help to breathe. I had to fight for him with all my strength: and we got the treatment he needed in London where he was trached and had a mic-key.

He’s a very clever, charming and a happy boy, in spite of needing a wheelchair and help to suction the secretions away. I worry every time he gets a cold or a little sick, but we do what we have to do - enjoying life.


Markus is my biggest hero! Every day he teaches me what life is about and I am blessed to be the mother of such a sweetheart.

Markus is a busy ten year old who loves everything to do with pirates. He also loves to play on the computer and Nintendo and he is teaching me all about iPhone and all of the apps! He also loves spending time with his 2 year old brother, Mathias, as well as his family and friends.

Markus is in Year 5 in mainstream school. This year he has a full time assistant with him every day so if he is too tired to go to school they do other things; they go to places like the zoo, library, home or to the room that Markus has next to his classroom. Markus can relax there during the day, and can have his nebulisers in there too. Markus’s school friends call this room the ‘machine room’ and they love relaxing in there with him.

Until last year, Markus only used the ventilator at night and occasionally sometimes during the day but he is now using it 24 hours a day as he feels more secure with it, and it gives him more energy to do the things he enjoys.

It’s wonderful to see how Markus is growing up and to see the quality of his life is amazing. There is always a smile on his face – he is a very happy boy!'

Mai-Lis, October 2012

(Norwegian version below)

Markus er min største helt! Han lærer meg alt om hva livet handler om hver dag. Det er å nyte hver dag, og være sammen med dem man er glad i. Jeg er utrolig heldig som er mammaen til Markus.

Han er en opptatt 10 åring. Han elsker å være en av kaptein sabeltanns menn, være på data, Ipad, ninendo og Iphone. Ellers elsker han å tilbringe tiden med lillebror Mathias og familie og venner.

Han i går i 5 klasse på Hellemyr skole i Kristiansand, men er fristilt fra alt det harde skolearbeidet. Han har en fulltid assistent som er med han på skolen. De fungerer også som BPA(brukerstyrt personlig assistanse) de dagene skolen er for tung eller han orker andre ting kan de være med han andre steder som f.eks i dyreparken,biblioteket eller bare være hjemme å hvile. På skolen har de også tilrettelagt med et rom vedsiden av klasserommet som medelevene har kalt «maskinrommet» De syntes også det er deilig å slappe av der innimellom sammen med han.

Helt til i fjor brukte Markus bare respiratoren på natt, men nå bruker han respirator 24 timer i døgnet. Han føler seg mest trygg da.

Det er fantastisk å være med Markus på livets vei. Livsgnisten og smilet hans inspirerer mange! Det er alltid et smil. Han er en lykkelig gutt!

Mai-Lis, 2012