Olivia's livreddende operation - Life For Olivia
Donation protected
(ENGLISH VERSION BELOW)
Hjælp Olivia til et værdigt liv
24-årige Olivia gik på Det Kongelige Teaters Balletskole fra 0-4. klasse, men smerte og gentagende skader satte en stopper for drømmen om at blive ballerina. Og i sommeren 2016 fik Olivia kraftige smerter, der ledte til en alvorlig diagnose.
Kørestolen har nu fået en meget central rolle i Olivias liv, efter hun har været delvist sengeliggende i over 3 år. Den er nødvendig for, at hun kan komme ud af huset, da hendes ben ellers svigter under hende.
Olivia har desperat brug for behandling, da hun er født med en genetisk bindevævslidelse, der bevirker, at den lim, der skal holde hendes krop sammen, er defekt.
Diagnosen er svær, da sygdommen er relativt ny og derfor endnu ikke er dækket under danske vilkår, modsat andre lande hvor diagnosen er godkendt. Alle behandlingsmuligheder i Danmark er udtømt. Hendes eneste håb er en operation i udlandet, hvor hun selv skal dække alle omkostningerne i forbindelse med behandlingen.
Indtil videre har vi samlet cirka 400.000 kr., så vi nærmer os målet på de 550.000 kr., der er nødvendige for at dække udgifterne til behandlingen. Vi håber derfor, at du eller din virksomhed vil være behjælpelig med en donation, der passer til jeres budget, så I kan hjælpe Olivia til et værdigt liv. Hver en krone tæller.
Olivia har stadig den sejeste og mest positive personlighed. Hun hjælper os andre med at klare hverdagen og bevare troen på, at hjælpen snart kommer.
Vi håber, at du vil hjælpe med til, at Olivia ikke blot kan overleve, men finde fornyet livsglæde.
Tak for din opmærksomhed!
Du kan også donere her:
Mobilepay: 682211
PayPal.me/LifeForOlivia
Find os på facebook.com/LifeForOliviaDK
Hvis du vil vide mere om Olivias sygdom og situation, så kan du læse videre herunder.
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.
er oftest en medfødt misdannelse af rygmarven, hvor rygmarven er bundet i den nederste del af rygraden. Derved mister rygmarven sin bevægelighed. Denne binding kan under vækst og daglige brug af ryggen give en skadelig påvirkning af rygmarven (Tethered Cord syndrom). Tethered Cord syndromet begynder, når rygmarven bliver så stram, at det medfører irritation og dårlig blodtilførsel så rygmarven ikke kan fungere som den skal. Symptomer kan inkludere stivhed i ben og fødder, tiltagende smerter og lammelser i benene, øget muskelspænding og overaktive reflekser i ben, sovende fornemmelser og føleforstyrrelser, problemer med blære og vandladning, skoliose mm

Brainstem = hjernestamme
________________________________________________________________________
ENGLISH VERSION
Olivia is a 21 year old woman who’s in desperate need of life changing and ultimately 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 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 a few surgeons in europe specializing in these conditions. As there's none in Denmark this means that Olivia is left to fund these essential surgeries herself as the danish government can't offer her any financial support or 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 90.000USD/74.000 euros to cover the cost of surgery, flights and transport, accommodation, rehabilitation, follow up appointments and also cover minor contingency costs. So far we have raised 34.000USD/28.000 Euros via this and other platforms. We will continue to update the goal amount on here, to mirror the remaining amount we need
You can also donate via PayPal.me/LifeForOlivia
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/
Thank you so, so much for your time
Below you can read more about Olivia’s conditions
____________________________________________________________________
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.
Tethered cord syndrome (TCS) is a neurological condition in which the spinal cord is attached (tethered) to the surrounding tissues of the spine. This prevents the spinal cord from moving to keep up with the lengthening of the spine as it grows. The result may be nerve damage and severe pain.

Hjælp Olivia til et værdigt liv
24-årige Olivia gik på Det Kongelige Teaters Balletskole fra 0-4. klasse, men smerte og gentagende skader satte en stopper for drømmen om at blive ballerina. Og i sommeren 2016 fik Olivia kraftige smerter, der ledte til en alvorlig diagnose.
Kørestolen har nu fået en meget central rolle i Olivias liv, efter hun har været delvist sengeliggende i over 3 år. Den er nødvendig for, at hun kan komme ud af huset, da hendes ben ellers svigter under hende.
Olivia har desperat brug for behandling, da hun er født med en genetisk bindevævslidelse, der bevirker, at den lim, der skal holde hendes krop sammen, er defekt.
Diagnosen er svær, da sygdommen er relativt ny og derfor endnu ikke er dækket under danske vilkår, modsat andre lande hvor diagnosen er godkendt. Alle behandlingsmuligheder i Danmark er udtømt. Hendes eneste håb er en operation i udlandet, hvor hun selv skal dække alle omkostningerne i forbindelse med behandlingen.
Indtil videre har vi samlet cirka 400.000 kr., så vi nærmer os målet på de 550.000 kr., der er nødvendige for at dække udgifterne til behandlingen. Vi håber derfor, at du eller din virksomhed vil være behjælpelig med en donation, der passer til jeres budget, så I kan hjælpe Olivia til et værdigt liv. Hver en krone tæller.
Olivia har stadig den sejeste og mest positive personlighed. Hun hjælper os andre med at klare hverdagen og bevare troen på, at hjælpen snart kommer.
Vi håber, at du vil hjælpe med til, at Olivia ikke blot kan overleve, men finde fornyet livsglæde.
Tak for din opmærksomhed!
Du kan også donere her:
Mobilepay: 682211
PayPal.me/LifeForOlivia
Find os på facebook.com/LifeForOliviaDK
Hvis du vil vide mere om Olivias sygdom og situation, så kan du læse videre herunder.
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.
er oftest en medfødt misdannelse af rygmarven, hvor rygmarven er bundet i den nederste del af rygraden. Derved mister rygmarven sin bevægelighed. Denne binding kan under vækst og daglige brug af ryggen give en skadelig påvirkning af rygmarven (Tethered Cord syndrom). Tethered Cord syndromet begynder, når rygmarven bliver så stram, at det medfører irritation og dårlig blodtilførsel så rygmarven ikke kan fungere som den skal. Symptomer kan inkludere stivhed i ben og fødder, tiltagende smerter og lammelser i benene, øget muskelspænding og overaktive reflekser i ben, sovende fornemmelser og føleforstyrrelser, problemer med blære og vandladning, skoliose mm
Brainstem = hjernestamme
________________________________________________________________________
ENGLISH VERSION
Olivia is a 21 year old woman who’s in desperate need of life changing and ultimately 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 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 a few surgeons in europe specializing in these conditions. As there's none in Denmark this means that Olivia is left to fund these essential surgeries herself as the danish government can't offer her any financial support or 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 90.000USD/74.000 euros to cover the cost of surgery, flights and transport, accommodation, rehabilitation, follow up appointments and also cover minor contingency costs. So far we have raised 34.000USD/28.000 Euros via this and other platforms. We will continue to update the goal amount on here, to mirror the remaining amount we need
You can also donate via PayPal.me/LifeForOlivia
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/
Thank you so, so much for your time
Below you can read more about Olivia’s conditions
____________________________________________________________________
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.
Tethered cord syndrome (TCS) is a neurological condition in which the spinal cord is attached (tethered) to the surrounding tissues of the spine. This prevents the spinal cord from moving to keep up with the lengthening of the spine as it grows. The result may be nerve damage and severe pain.
Organizer
Cecilie Bruhn
Organizer
Herning