Thank you for visiting my crowdfunding page.

This may be one of the hardest things I’ve ever had to do. This time, I’m not sharing my story to inspire others or to offer support—this time, I’m sharing it because I need your help.

For those who don’t know me, I’m Ilse, 20 years old. I’ve always tried to be strong and handle everything on my own. When you ask me how I’m doing, I’ll swallow my tears and give you a smile. My head is full of energy, hope, and dreams. I want to believe that everything will be okay—but it won’t be, not on its own. I need life-saving surgery. I’m ready to give it everything I have and fight with all my strength, but I can’t win this battle alone.

My struggle
I’ve been ill for years, but for a long time I was still a girl who could play sports at a high level, study, spend time with friends, live independently, and make exciting plans for the future. Now, my world has completely changed. Out of necessity, my life now happens between hospital walls or at home. I spend my days lying down, dependent on tube feeding, medical support, a wheelchair, and 24/7 home care. The freedom I once took for granted has been replaced by pain, sadness, dependency, and fear of what’s to come.

The reality is harsh and unforgiving. My organs are starting to fail. My body is exhausted. Every day is a fight to survive. I suffer from multiple vascular compression syndromes. In short, this means that blood vessels and organs are being compressed. The imbalance—too little blood flow in some areas and too much in others—leads to severe pain, potential organ failure, major damage to my body, and life-threatening complications. The root cause is most likely Ehlers-Danlos syndrome, a rare inherited connective tissue disorder. Normally, connective tissue keeps everything in the body strong and in place, but with Ehlers-Danlos, it’s too weak. This allows joints, blood vessels, and organs to shift out of place, leading to serious complications.

These are invisible diseases with severe, disabling consequences. My symptoms affect my entire body. I suffer from frequent pain attacks, and my condition is rapidly deteriorating. Getting a diagnosis has been a long and difficult journey, largely because the syndromes are so rare.

Diagnoses:
Ehlers-Danlos Syndrome
Multiple vascular compression syndromes:, Wilkie syndrome (SMAS), Nutcracker syndrome, MALS, May-Thurner syndrome, Pelvic congestion syndrome, 

Additional diagnoses: Gastroesophageal reflux disease, Endometriosis, Adenomyosis, Gastroparesis, Nephroptosis, Dysautonomia and POTS 

Why abroad?
For a long time, I had no options. Unfortunately, treatment isn’t available in the Netherlands. These syndromes are still too unknown here, and my case is very complex. But in Spain—specifically in Málaga—I found hope. There, a specialist and his experienced team treat patients from all over the world who suffer from these conditions. They still see possibilities for me.

For the first time in a very long time, I dare to dream again—just a little. Not of a full recovery—I know that’s not possible—but of a better quality of life, less pain, and above all, more time. Time to live again, not just survive.

It will be an extremely difficult journey. I will start with diagnostic tests under anesthesia. We hope that I can regain some strength with TPN feeding, which provides nutrition directly into the bloodstream via a central line. I will undergo several surgeries. On June 19th, I’m scheduled for major open abdominal surgery, including autotransplantation of my kidney, intestinal reconstruction, and MALS correction. Depending on how I recover, a second surgery will follow shortly after to treat May-Thurner syndrome. It will be a long, intense battle, but I am willing to fight for my last hope. I just can’t do it alone.

Why a crowdfunding campaign?
This crowdfunding effort is necessary because the surgeries and related care in Spain are not covered by insurance. These procedures are not performed in the Netherlands and are therefore not included in any insurance package. There are no guarantees—but this is my best and only chance. A large amount of money is needed so that I can undergo surgery and hold on to the hope that my dream might still come true. Because of the urgency of my condition, I will already travel to Spain in early June.

The cost for the operations: € 85.000,-

What does this include? All surgeries, including surgical procedures, jejunostomy tube, ICU care, extended hospital stay, TPN, medications, and additional tests

Every donation goes directly to the medical care I urgently need. I want to keep dreaming. I want to keep hoping. I want to live so badly. Every single donation—no matter the amount—is deeply appreciated by me and those close to me. Your support brings me one step closer to my biggest dream. You can also help me tremendously by sharing my story.

If you’re unable to donate through this platform from your country, you’re warmly welcome to make a direct bank transfer. This is a dedicated medical account opened specifically for the funding of Ilse’s life-saving treatments. All contributions go directly toward her medical expenses.

IBAN: NL25 RBRB 8848 9752 24 to account holder: F.J.A. Keuning (my Dad)
BIC: RBRBNL21

Thank you for your time, attention, and support. Your help means more than words. It means hope—and a future.

With love,
Ilse