Laetitia in the newspaper
Laetitia 19 y/o together with her mother, she has excruciating pain that won't go away. ©Frank de Roo
A scrape changed Laetitia's (19) life completely: 'Seven years of hellish pain'
It was a silly accident. On holiday, Laetitia fell from the pool steps and scraped her knee. That was seven years ago. Now she has been in a wheelchair for years and excruciating pain keeps her at home and confined to bed. Nevertheless, Laetitia (19) and her mother believe that a normal, pain-free life lies ahead [within reach/lies in the offing]. She wants to seize that one - last - chance.
Laetitia Mora Aguilar doesn’t want to look [seem] like a sick child. Her dark hair hangs over her shoulders and she’s wearing long pants and socks; clothes she actually can’t bear. Any touch on her lower legs, no matter how light, is one too many.
This is the result of CRPS, the Complex Regional Pain Syndrome that she has been enduring for seven years now and is also known as the suicide disease. Laetitia sits in a wheelchair, but not against the backrest. The same applies to her back: a touch is too painful. To an outsider, she can only describe her inhuman pain. It feels like stabbing or electric shocks. "But a thousand times worse." Doctors call CRPS pain more severe than an amputation or a difficult childbirth without anesthesia.
Swimming with dolphins
The story of the Rotterdam family begins in Benidorm in the summer of 2017.
Mother Mariela, who doesn't leave her daughter's side for a second, tears up when someone points to the photo in the hallway: Laetitia as a 12-year-old girl, in the water with a dolphin. "That was one day earlier." Before she fell off the steps into the pool, got stuck and scraped and bruised her right knee. A trivial accident.
The next day she had a bump “the size of an egg” on her knee. “After that,” says the teenager, “I alternated between walking on crutches, sitting in a wheelchair and being able to walk normally. Since May 2020 I have been completely in a wheelchair.”
She bravely works her way through the explanation that at first comes mainly from her mother. Gradually the soft voice changes into a clear explanation. Yes, everything takes energy, but she also wants to tell it herself at all costs.
Laetitia, then only 12 y/o, on holiday in Benidorm-Spain before she sprained her knee... © Personal photo
That CRPS is a rare disease of the nervous system. That a ‘trauma’, a painful moment such as a broken bone or in Laetitia’s case a big sprain, is at the basis, but that after recovery an unbearable pain remains. That in addition so-called allodynia can occur, an additional symptom that causes extreme touch pain. Then, the lightest touch, even that of a raindrop, gets enormously amplified by the nerves.
And that CRPS knows many forms, mostly occurs in the elderly and sometimes lasts only weeks to a few months. Laetitia is, irreverently said, a special case.
Indescribable pain
She is still just a child when she gets it and it has since then - because the diagnosis of CRPS was made too late - spread from one lower leg to the other and then to both lower arms and back. Additionally, she has swelling and skin that turns red and is oversensitive. What looks like a blush on her cheeks, isn't.
She tries to smile after that last remark. But there is little reason to smile in her young life. In those seven years she has been in and out of hospital, she has seen one medical specialist after another physiotherapist and has undergone painful rehabilitations and treatments. Mariela: "I call it a medical circus."
She was unable to finish high school. In the Netherlands, doctors have given up on her. She has exhausted all treatment options and ‘just has to learn to live with the pain’. And it is there every moment of the day.
Just after the accident, that would determine the rest of her life. ©Personal photo
Bed in the living room
Mother Mariela shakes her head. That almost no one here sees how her daughter suffers and what impact it has. They go through hell together and together through thick and thin. Laetitia's hospital bed stands in the living room of an apartment in Rotterdam-Oost; she herself sleeps on the couch next to her. "I don't want to leave her alone for a moment." Mariela's life consists of taking caring of her daughter 24 hours a day. Laetitia's life consists of only one thing: surviving, while waiting for a treatment that will rid her of CRPS.
"It was my last hope there. If you go back, what do you have left?
-Laetitia Mora Aguilar
A trip to a clinic in America four years ago should have been the turning point. It is described painfully honest on the website hopeforlaetitia.nl of the Rotterdam woman. "The CRPS was supposed to go into remission. That is when the symptoms of the disease disappear and you become healthy again." After more than a year, she was in an even worse condition than when she went there. "It was my last hope there. if you go back home, what do you do?"
She couldn't take it anymore. The words suicide disease haunted her mind. Those memories make Mariela especially emotional. "Laetitia was severely depressed and I was also pretty down."
‘I won’t give up!’
But they have pulled themselves together. Together they absolutely believe that it is possible: to free her body from the hellish pain. They have seen it many times: others who recover after many years with the right treatment for them. Mariela: ,,We won’t give up.”
A laser technique had already had a positive effect years earlier. "That helped with some symptoms, but at the time they didn't know much about it," she says. "Now a whole treatment has been developed around it."
"I am focused on one thing: getting better!
-Laetitia Mora Aguilar, suffers from CRPS
That could be her salvation. The doctors at the NeuroSolution Center in Texas in the US are convinced of that, she was told during her intake interview. "They even apologized because it would take about six weeks before good results would be visible...”
However, not only is the money lacking, she is also not physically ready for it. Mariela: "Laetitia is so ill that she cannot handle such a travel now. It would be too much of a physical strain on her; with all the consequences that entails." That is why she must first get started at home. If the means are available through a crowdfunding campaign to purchase the necessary devices - she already has the first one - she can finally start to tackle the CRPS. Then, she must complete the treatment in America.[She then has to complete her treatment in America.]
That's what Laetitia and Mariela are holding on to. "I'm focused on one thing: getting better!"
Please help Laetitia by sharing her story and gofundme with friends/ family/ social media/ etc and donate.
gofundme.com/hope-for-laetitia
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