For english, see below 
 
Det här är Henny, vår otroligt glada och nyfikna lilla dotter som nu hunnit bli 7 månader. Hon älskar visan Imse vimse spindel och att leka tittut med sin storebror. Som vissa av er redan vet så föddes Henny sjuk. Efter månader av ovisshet fick vi besked att Henny lider av den sällsynta sjukdomen Nemalinmyopati. Sjukdomen påverkar alla muskler i kroppen och kan bland annat medföra svårigheter att röra sig, att andas samt att äta, svälja och prata. De kognitiva funktionerna påverkas inte av sjukdomen. Henny är en av cirka 20 personer i Sverige som lever med Nemalinmyopati. Sjukdomen påverkar alla olika men den är allvarlig och har för Henny inneburit månader på sjukhus och hon har stundtals fått kämpa för sitt liv. 
 
Det har inte varit en självklarhet för oss att berätta om Hennys tillstånd men vi gör det nu för hennes skull och även för de som vandrat denna väg före oss, för de som kämpat men förlorat kampen och för de som kommer efter oss. Genom att berätta vill vi samtidigt be om er hjälp för att Henny och andra som är drabbade ska få chansen till en bättre framtid. I dagsläget finns ingen behandling mot sjukdomen men forskning pågår i detta nu och flera studier visar på lovande resultat inför framtida kliniska tester. 
 
Organisationen A Foundation Building Strength arbetar dedikerat för att hitta en botande behandling och finansierar flertalet internationella forskare och studier inom området. Vi ber er därför att tillsammans med oss stötta deras avgörande arbete genom att lämna ett bidrag till Hennys insamling. Vårt hopp står till forskningen och med ditt bidrag kommer den ett steg närmare ett botemedel mot den här orättvisa sjukdomen. 
 
Om du hellre vill swisha ett bidrag, ange nummer NOLLSJUTRE-0936341 så ser vi till att pengarna oavkortat överförs till hennes insamling. 
 
Tack för ditt stöd och att du står enad med Henny och oss som familj i kampen mot Nemalinmyopati. 
 
Här han du läsa mer om A Foundation Building Strength och deras viktiga arbete: <a href="https://buildingstrength.org/target=_blankrel=noreferrer" target="_blank" rel="noreferrer noopener"><a href="https://buildingstrength.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://buildingstrength.org/</a></a> 
 
_ 

This is Henny, our incredibly happy and curious little daughter who is now 7 months old. She loves the song Itsy Bitsy Spider and playing peek-a-boo with her big brother. As some of you already know, Henny was born sick. After months of uncertainty, we were informed that Henny suffers from the rare disease Nemaline myopathy. The disease affects all muscles in the body and can, among other things, cause difficulties in moving, breathing, eating, swallowing and speaking. Cognitive functions are not affected by the disease. Henny is one of about 20 people in Sweden who suffers from Nemaline myopathy. The disease affects everyone differently, but it is a serious condition and for Henny it has meant months in hospital and she has had to fight for her life. 
 
It hasn't been easy for us to discuss Hennys condition openly, but we are doing it now for her sake, and also for those who have walked this path before us, for those who have fought but lost the fight and for those who comes after us. By telling this story, we also want to ask for your support so that Henny and others who are affected will have the chance for a better future. Currently, there is no treatment for the disease, but research is underway and several studies show promising results for future clinical trials. 
 
The organization A Foundation Building Strength is working dedicatedly to find a curative treatment and funds several international researchers and studies in the field. We therefore ask you to support their crucial work together with us by making a donation to Henny's fundraising. Our hope is in the research and with your contribution, it will come one step closer to find a cure for this unjust disease. 
 
Thank you for your support and for standing united with Henny and us as a family in the fight against Nemaline myopathy. 
 
Here you can read more about A Foundation Building Strength and their important work: <a target="_blank" rel="noreferrer noopener"><a href="https://buildingstrength.org/" target="_blank" class="" rel="nofollow noopener noreferrer">https://buildingstrength.org/</a></a>

Urban Sundbom

Agneta Pettersson

Rebecca Nilsson

Pauliina Stjärnström

Maya Gyllefjord

Vilda Kidz

Klas och Sophie Albertsson Lundström

Sabina Bergqvist

Anette Tarden

Lise-Lotte Nordlund

Sandra Lundberg

Nina Markström

Mats Wennerlund

Terese Tuvebäck

Jörgen Pucher

Maria Engström

Linnéa Wennberg

Natalja Salaithong

Anders Fält

Anonymous

Hopp för Henny: Bidra till forskningen om Nemalinmyopati

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