A STAR for FELIX

Found tion

To support Salla disease treatments, research, education, awareness, & family networks  

A MESSAGE FROM THE BECHER FAMILY

Hei. Jeg heter Mari, og er mammaen til verdens fineste gutt Felix. Sammen med mannen min Niklas, fant vi ut Felixhadde Sallas sykdom når han var 21 måneder gammel. 

 

Felix er den mest sosiale gutten, han elsker mennesker og sier «hei» til alle han møter. Musikk er noe av det beste Felix, og hører helst på musikk hele dagen. 

 

Når Felix var 3 måneder gammelt, begynte vi se at fremgangen hans var veldig mye senere enn andre barn på samme alder. Han likte ingen leker, han brydde seg ikke om noen av lekene vi kjøpte. Han lå kun på ryggen sin, og kunne verken snu seg rundt eller holde hodet sitt oppe selv når han lå på magen. 

 

Vi spurte legene og helsestasjonen at vi følte det var noe som ikke stemte helt, de sa det var normalt for noen barn og vi ikke skulle bekymre oss. Vi gikk fra alle disse møtene med føles om at vi var over bekymret førstegangsforeldre, noe som var veldig ubehagelig når vi virkelig følte i mamma og pappa hjerte at noe ikke helt stemte. 

 

Månedene gikk og fremgangen var der - bare veldig mye saktere enn hos andre barn. 

 

Når Felix var 9 måneder gammel, hørte endelig legene etter og de begynte selv å bli bekymret for at det kunne være noe, da han lå ganske langt bak de andre på samme alder. Vi ble henvist til Ullevål Sykehus og var inne til utallige tester, vi sjekket blant annet hoften hans om det kunne være grunnen til at han verken krabbet eller satt selv. Etter det begynte vi med gentesting og etter 7 måneders ventetid, da Felix var 21 måneder fikk vi diagnosen Sallas. Det var veldig lite informasjon å hente om denne sykdommen, da den er så sjelden og det er veldig få som har den. 

 

Vi vet ikke hva fremtiden bringer, men vi skal kjempe for Felix og gjøre alt vi kan for å hjelpe han. 

 

Mamma og Pappa elsker Felix sin. Du er det beste som noen gang har skjedd oss. 

Hello. My name is Mari and I am the mother of the world's finest boy Felix.

 

Together with my husband Niklas, we found out Felix had Salla's disease when he was 21 months old.

Felix is ​​the most social boy, he loves people and says "hello" to everyone he meets. Music is one of the best Felix's, and prefers to listen to music all day.

When Felix was 3 months old, we began to see that his progress was much later than other children of the same age. He didn't like any toys, he didn't care about any of the toys we bought. He was lying on his back only, and could not turn around or keep his head up even when lying on his stomach.

We asked the doctors and the health station that we felt it was something that wasn't quite right, they said it was normal for some kids and we shouldn't worry. We went from all these meetings with the feeling that we were overly concerned about first-time parents, which was very uncomfortable when we really felt in my mom and dad's heart that something wasn't quite right.

The months went by and progress was there - only much slower than with other children.

When Felix was 9 months old, the doctors finally listened and they even began to worry that it might be something, as he was quite far behind the others at the same age. We were referred to Ullevål Hospital and went to numerous tests, we checked his hip, among other things, if it could be why he neither crawled nor sat himself. After that we started with gene testing and after 7 months of waiting, when Felix was 21 months we were diagnosed with Sallas. There was very little information to retrieve about this disease, as it is so rare and very few have it.

We do not know what the future will bring, but we will fight for Felix and do everything we can to help him.

Mom and Dad love Felix. You are the best thing that ever happened to us.

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Salla Treatment And Research Foundation | PO Box 1051 | Riverdale Station | Bronx, NY 10471

©2018 by STAR for Ben