Vascular surgery for Anne

For English, scroll down :)

Lieve allemaal,

Allereerst, dankjewel dat je een kijkje neemt op deze GoFundMe pagina. Anne is al een aantal jaren ziek en heeft een buikoperatie nodig in Malaga voor haar zeldzame vasculaire compressiesyndromen. Omdat dit niet uitgevoerd en vergoed wordt in Nederland hebben we jullie hulp hard nodig. Hieronder wordt Anne's verhaal verder toegelicht. Dank jullie wel voor de tijd en steun, dit betekent veel voor ons.

Anne haar verhaal 

Anne is 21 jaar oud, en al haar hele leven graag buiten, bezig met dieren, muziek en ze spendeert graag tijd met familie en vriendinnen. Afgelopen jaren is haar leven compleet veranderd. Sinds ze jong is heeft ze al lichamelijke klachten. Het begon al voordat ze kon praten met buikpijn, verstoppingen, pijn in haar benen, ontstekingen en meer 'vage' klachten. Tot 2020 heeft ze echter een vrij 'normaal' leven kunnen leiden. In 2020 ging het snel achteruit, ze kon niet meer eten en al snel kwam naar boven dat haar maag en darmen vertraagd werken. Inmiddels is ze al vanaf 2021 volledig afhankelijk van sondevoeding, die rechtstreeks in haar dunne darm terecht komt. 'Normaal' eten zorgt voor ontzettend veel pijn, overgeven en misselijkheid, waardoor dit helaas al lange tijd geen optie is voor Anne. 

Ondanks de diagnoses die in Nederland al gesteld zijn, is er hier geen behandeling meer mogelijk, oftewel; 'leer er maar mee leven'. 

Afgelopen maanden gaat het slechter en slechter met Anne en op dit moment worstelt ze met ondervoeding doordat zelfs de voeding in de darm niet meer verdragen wordt en zorgt voor extreme pijn. Ze kan niet meer naar school, niet werken en het sociale leven ligt zo goed als stil. 

Vasculaire compressiesyndromen en second opinion in Malaga 

Voor een second opinion zijn wij begin april 2025 met Anne naar Malaga gevlogen. Hier werden onze vermoedens die we al sinds 2021 hadden, bevestigd. Dokter Morata heeft Anne na verschillende onderzoeken gediagnostiseerd met 4 zeldzame vasculaire compressiesyndromen: 

• SMAS 
• MALS 
• Nutcracker Syndroom 
• May Thurner Syndroom 

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Dear all,

First of all, thank you for taking the time to visit our GoFundMe page. Anne has been ill for several years and needs abdominal surgery in Málaga to treat her rare vascular compression syndromes. As this surgery is neither performed nor covered by insurance in the Netherlands, we are in urgent need of your help.

Below, you can read Anne’s full story. Thank you so much for your time and support — it means a lot to us.

Anne’s Story

Anne is 21 years old and has always loved being outdoors, spending time with animals, enjoying music, and being around her family and friends. Over the past few years, her life has completely changed. She has experienced physical symptoms since she was very young. Even before she could speak, she suffered from abdominal pain, constipation, leg pain, inflammation, and other vague symptoms. Despite everything, she managed to live a relatively “normal” life until 2020.

In 2020, her condition rapidly got worse. She could no longer eat, and soon it became clear that her stomach and intestines were not functioning properly. Since 2021, she has been entirely dependent on tube feeding that goes directly into her small intestine. Eating normally causes her intense pain, vomiting, and nausea — making it an impossible option for her.

Although doctors in the Netherlands have given her diagnoses, no further treatment is available here — she has essentially been told to "learn to live with it."

In recent months, Anne’s condition has gotten worse and worse. She is now struggling with malnutrition because the feeds into her intestines cause extreme pain. She can no longer attend school, cannot work, and her social life has come to a complete halt.

Vascular Compression Syndromes and a Second Opinion in Málaga

In April 2025, we traveled with Anne to Málaga for a second opinion. There, the suspicions we’ve had since 2021 were finally confirmed. After several tests, Dr. Morata diagnosed Anne with four rare vascular compression syndromes:

Suddenly, all the vague symptoms she had as a little girl made sense.

Vascular compression syndromes cause organs and blood vessels to be compressed, resulting in high pressure on certain organs and either a lack or excess of blood flow in various parts of the body. Because of these compressions, Anne experiences severe, life-limiting symptoms and daily pain — and she cannot eat.

The Surgeries

On June 14th, 2025, we will return to Málaga, where Dr. Morata will perform major abdominal surgery to relieve the vascular compressions. The week before the surgery, Anne will already be admitted and receive TPN (Total Parenteral Nutrition), which is intravenous feeding through a central line to help her build strength.

The complete treatment will include three surgeries:

Due to Anne’s current malnutrition, we’ve decided to postpone the Nutcracker operation, as it would be too much for her body to endure all at once. This operation is not included in the current GoFundMe target amount.

These surgeries — and the relief of these compressions — give us a sense of hope again. Hope for a better, more manageable life, with less pain and discomfort. Hope that Anne will finally be able to reclaim her life after so many years. And hope for a life without feeding pumps and medical lines.

How you can help

Unfortunately, this surgery is not covered by insurance in the Netherlands, and there is not enough expertise here to treat these rare compression syndromes. This means we will need to finance everything ourselves. That’s why we are asking for your help. Please don’t feel obligated to donate — even sharing this page helps us tremendously.

The total cost amounts to €60,000

This includes the surgeries, hospital stay, tests, and travel expenses.

Of course, every donation will go directly toward Anne’s treatment. Every little bit helps, and we are deeply grateful for all support.

The surgery in Málaga is Anne’s only chance for improvement — and her condition is becoming more and more alarming. Anne wants her life back so badly. We wish more than anything for her to be able to start living her life again. We have all the hope and trust in Dr. Morata to help her achieve this.

Updates will be shared via this page and instagram and facebook.

• Instagram: @annevangoor, @teamanne2025 
• Facebook: https://www.facebook.com/share/1F82pSsLYU/?mibextid=kFxxJD
  

Thank you so much for reading Anne’s story and for all your support — it truly means the world to us.