Olivia's livreddende operation - Life For Olivia

(ENGLISH VERSION BELOW)

Olivia er en 21-årig kvinde, som desperat har brug for en livsnødvendig operation

“Hun har altid været en meget livsglad og positiv pige med stort drive og gåpåmod. Hendes store engagement i heste holdt hende i gang med ridningen, til trods for smerter i ankler og håndled samt nakken.”

(Olivia før hendes helbred gik drastisk ned af bakke)

Olivia er født med en genetisk bindevævslidelse, der bevirker, at den ‘lim’, der skal holde hendes krop sammen, er defekt. Det påvirker hele kroppen og giver symptomer, som svære kroniske smerter, gentagne skader og ledskred, kronisk træthed, hovedpine og migræne, fordøjelsesproblemer mm.

“Fra 0-4. klasse gik hun på Det Kongelige Teaters Balletskole, men måtte opgive balletten grundet smerter og gentagne skader. Da Olivia i sommeren 2016 for alvor fik ondt – og nu havde smerterne spredt sig til knæ og hofter samt voldsomme migræner – blev der efter mange lægebesøg endelig sat gang i en udredning/diagnosticering.”

Olivia levede et forholdsvis almindeligt liv indtil sommer 2016, men i efteråret 2017 gik hendes helbred drastisk ned ad bakke, og hun fik konstateret flere seriøse sygdomme – heriblandt kraniocervikal ustabilitet (CCI) og atlantoaxial ustabilitet (AAI). Disse typer af ustabilitet betyder at hendes rygsøjle ikke kan holde til vægten af hendes hoved.Hendes hjernestamme, nerver og blodårer i nakken bliver klemte, og udsat for alvorlig, varig skade.

“Det sidste års tid har Olivias dagligdag foregået fra plejesengen på hendes værelse. På en god dag sidder hun op få timer, mens hun tegner eller maler, og kun når hun har overskud til det, spiser hun sammen med os andre i køkkenet. Hendes tilstand er nedadgående og stærkt smertebehandlet, da hun ellers ikke ville kunne udholde smerterne i nakken. Kørestolen har også fået en meget central rolle i Olivias liv i hjemmet, og er helt nødvendig de få gange hun skal ud af huset, da hendes ben ellers svigter.”


Disse lidelser har givet livstruende komplikationer og symptomer, og har medført at hun nu bruger størstedelen af sin tid i sengen, og mange dage ikke er i stand til at forlade huset. At stå og sidde giver Olivia voldsomme nakkesmerter og migræne. Hun har svært ved at gøre helt almindelige ting – blot det at læse – grundet synstab, sløret syn og kognitive vanskeligheder.
Hendes gangfunktion er meget begrænset, og forsvinder helt i perioder, hvor spasticitet gør det umuligt for hende at stå og gå. Scanninger viser at hendes øverste ryghvirvel (C1) går delvist af led hver gang hun drejer hovedet. Dette gør at hun er risiko for er fuldt ledskred af C1 – også kaldet “indvendig halshugning”.

Uden en operation er der stor risiko for, at Olivia ender med at blive lammet fra halsen og ned – og i sidste ende risikerer hun at dø.

“Det er utrolig svært at se ens livsglade og meget aktive datter ikke længere have et socialt og fysisk aktivt liv. Hendes liv foregår på værelset i sengen, og alene på de sociale medier. Hun har måttet droppe drømmen om at få en bachelor i Multiplatform Storytelling (film), og måttet indse, at et fuldtidsjob samt den karriere, hun drømte om, ikke længere er en mulighed. Ingen ridning eller anden sport er ikke længere muligt, da hun efter få timer udenfor hjemmet er så træt, at hun ofte får migræne og feber, og herefter kan det tage op til et døgn før hun atter kan fungere igen”

Og det er derfor vi har brug for DIN hjælp! Denne risikable og komplicerede operation kan kun udføres af én ekspert i Europa - Dr. Gilete i Barcelona.

Det danske sundhedssystem har ikke kunnet hjælpe Olivia, hvilket betyder at Olivia selv må betale for hendes livsreddende operation. Det haster! Jo længere vi venter, jo værre bliver hendes tilstand, og jo flere varige mén vil hun få.
Vi har desperat brug for hjælp til at redde Olivias liv.
“Olivia har stadig den sejeste og mest positive personlighed, som hjælper os andre med at klare hverdagen og bevare troen på, at hjælpen snart kommer. Olivia finder nye veje til at leve og ikke kun overleve.”

Vi har brug for 135.000 euro - 1 million danske kroner - for at kunne betale for operationer, transport, rejseomkostninger, hotel, opfølgende aftaler efter operationerne, mm. Som tingene ser ud nu, vil der stadig ikke være nogen hjælp til Olivia når hun vender hjem til Danmark, så hun skal også selv finansiere den nødvendige genoptræning, mm.

Hvis vi når over målet, vil pengene gå til Olivias vedvarende helbredsrelaterede udgifter – herunder fysioterapi, hjælpemidler, medicin, specialistkonsultationer, mm. (som kommunen og staten ikke dækker).



Herunder kan du læse mere om Olivias lidelser:

Kraniocervical ustabilitet (CCI) er en alvorlig tilstand hvor rygsøjlen er ude af stand til at bære hoveds vægt. I Olivias situation er tilstanden udløst af hendes bindevævssygdom som gør ledbåndene for svage til at støtte rygsøjlen. Ustabiliteten gør at kraniet og den øverste (C1) nakkehvirvel glider ud af led, hvilket klemmer hjernestammen og nerverne, og bremser omløbet af blod og spinalvæske. Kraniet bør kun kunne ‘glide’ 1 millimeter, Olivias glider 5.4 millimeter. Sammenklemningen og presset på hjernestammen er en af de primære grunde til hendes alvorlige og invaliderende symptomer. Ustabiliteten er også grunden til Olivias kompression (sammenklemning) af halspulsåren, som har udløst intrakraniel hypertension (IH). IH betyder at trykket i hjernen er for højt, det giver modbydelig hovedpine (ofte beskrevet som den værste migræne nogensinde), tinnitus og synstab, der kan være permanent og føre til blindhed.

Atlantoaxial ustabilitet (AAI) er næsten identisk med CCI, og giver de samme symptomer og komplikationer. Forskellen er at AAI er en ustabilitet mellem første og anden nakkehvirvel (C1-C2), hvor CCI er mellem kraniet og C1. AAI kaldes også ‘rotationsustabilitet’ da 50% af hovedets rotation sker i C1-C2-leddene. Olivias AAI er så alvorlig, at hendes nakke går delvist ud af led hver gang hun drejer hovedet. Et fuldt ledskred vil betyde man bliver halshugget indvendigt, hvilket er fatalt.

Udover dette lider Olivia også af ustabilitet i resten af nakken og bunden rygmarv (tethered cord syndrome)


Brainstem = hjernestamme
________________________________________________________________________
ENGLISH VERSION

Olivia is a 21 year old woman who’s in desperate need of life saving surgery

“She has always been a happy, positive girl with a big drive that’s full of life. She started horseback riding at age 4, and her huge dedication and love for horses meant she was always active and spending her time at the stables, despite the pain in her ankles, wrists and neck.”
(Olivia before her health took a turn for the worse)

Olivia was born with a connective tissue disorder, causing the glue that holds her body together to be defective. This causes multiple issues, including chronic pain, recurrent injuries and joint dislocations, chronic fatigue, headaches, GI issues, etc.. She lived a relatively normal, active life with dance, horseback riding and taking care of her own horses.

“From ages 6-10 she danced at the danish royal ballet academy, but then she had to stop due to the pain and recurrent injuries.
In the summer of 2016 Olivia’s pain started worsening, and after countless doctors visits she finally received a diagnosis”

In the fall of 2017 Olivia’s health took another turn for the worse, and she deteriorated rapidly, leading to additional diagnoses of multiple issues, including craniocervical instability (CCI) and Atlantoaxial instability. These instabilities mean that her spine can’t handle the weight of her skull. Her brainstem, nerves and veins around it are being crushed and seriously damaged.



These conditions are causing Olivia severe and life threatening symptoms and complications that have left her mostly house or bedbound. Being upright causes horrid neck pain, headaches and migraines. She’s struggling with basic things, including reading, due to vision loss, blurry vision and cognitive impairment.

“Her last year has been spent in a hospital bed in her room. On good days, she's able to sit up and paint or draw, and when she has the energy she’ll join us for dinner.
She’s deteriorating and she requires strong pain medications to cope with her severe neck and head pain. Oftentimes she requires her wheelchair just to get around the house, and it’s a must the few times she leaves the house, as her legs are no longer able to carry her”

She has a very short walking distance, and is episodically losing the ability to walk and stand due to spasticity.
Every time she turns her head, the C1 vertebra partially dislocates and puts her at risk of internal decapitation.
Without surgery for this instability and it’s related complications, Olivia risks being paralyzed from her neck down and ultimately dying.

“It’s incredibly hard to see your once full of life and active daughter no longer able to have a proper social life or be physically active in any way. She lives her life from her bed where she’s able to interact with the world through social media.
She’s had to give up her dream of ever getting a degree in filmmaking (multiplatform storytelling) and face the reality that she will probably never be able to have a full time job and career.
She’s not able to do horseback riding anymore, or any activity outside of the house in general. Just a few hours outside her home often leaves her with a migraine and fevers, and it can take up to a day before she’s recovered.”


However, there’s only one surgeon in Europe able to perform these complicated and risky surgeries- Dr. Gilete in Barcelona.
This means that Olivia is left to fund these live saving surgeries herself as the danish government won’t offer her any help.

This is urgent. The longer we wait, the worse she’ll get, and the more irreversible damage she’ll be left with. We desperately need YOUR help to save Olivia’s life!

“Olivia is still the most resilient and positive person who helps those around her get through every day and keep their hopes up. She’s always found new ways to thrive and not just survive”

We will need 135.000 euros to cover the cost of surgery, flights and transport, accommodation, rehabilitation, follow up appointments and also cover minor contingency costs.

If more than needed for surgery is raised, these funds will be going towards Olivia’s basic needs that’s she’s currently struggling to afford. This includes medications, physical therapy, appointment with proper specialists, braces or aids, etc.

The campaign currency is in danish kroner(DKK), please use the currency converter if you use another currency and need help converting. You can also choose your own currency when donating if you do so from a PC.
https://www.xe.com/currencyconverter/




Below you can read more about Olivia’s conditions

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Craniocervical instability is a serious condition where the cervical spine becomes unable to support the head. In Olivia’s case, this is due to her connective tissue disorder, which causes the ligaments to be too lax to support the spine.

The instability makes the skull and C1 vertebra slide out of place, which causes compression of the brainstem, nerves and obstruction of the blood and spinal fluid flow to the head. While the skull is only supposed to be able to slide 1 millimeter, Olivia’s skull slides 5.4 mm. The compression of the brainstem is what causes the majority of Olivia’s serious and debilitating symptoms. The instability is also causing her jugular vein compression, which has led to her developing intracranial hypertension (IH). The IH means that the pressure in the brain is too high, which causes horrible headaches, tinnitus and vision loss that can lead to permanent blindness.

Atlantoaxial instability (AAI) is almost identical to CCI, causing the same symptoms, complications etc. However in AAI, the instability happens between the first and second vertebrae (C1-C2). It’s also called rotational instability since 50% of the heads rotation happens in this joint. Olivia’s AAI is so severe that her neck partially dislocates every time she turns her head. A full dislocation of this joint is called internal decapitation, which is fatal.

Furthermore, she suffers from instability in the rest of the neck, and tethered spinal cord syndrome.

Donations (0)

  • Sally Krogshave 
    • kr50 
    • 13 hrs
  • Nicklas Norfast 
    • kr300 
    • 7 d
  • Alexander Borg 
    • kr1,000 
    • 1 mo
  • Freja Pedersen 
    • kr200 
    • 1 mo
  • Anonymous 
    • kr100 
    • 1 mo

Organizer 

Cecilie Bruhn 
Organizer
Herning, Denmark
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