Help Laetitia regain a painfree life from debilitating CRPS

Hi dear reader,

This is the story about my sweet daughter Laetitia. This year (2024) Laetitia turned 19 years old and it is the third year in a row, she didn't want to celebrate her birthday, because Laetitia lifes excists of being in constant excruciating pain almost full body, being bedridden and housebound about 4 years now. Laetitia sees herself aging without being able to live her life as a normal teenager.

Laetitia’s story

Since August 2017 Laetitia has been living 24/7 with the extremely painful disease called CRPS.After an "innocent" accident in a swimming pool, what at first sight appeared to have only caused a simple bruise and sprained knee and ankle, recovery stayed out. This was the beginning of a nightmare named CRPS that Laetitia was about to experience till this day. In the first weeks after the accident, her leg started to hurt more which was soon followed up by neuropathic pain attacks. Her leg and ankle were swollen and couldn’t even be touched. And the pain started to take enormous proportions. After more than two years of seeing lots of specialist, doctors and painfull physical therapy treatments and hospitalizations, Laetitia got the diagnosis CRPS.

Since 2019 the CRPS has spread from her right leg to her hands, wrists, lower arms, back and left leg and is now almost full body. The pain is daily on average at level 9,5 on a scale of 0-10. Laetitia experiences pain as knife stabs, burning pain, thousands of needles, (electric) shooting, throbbing, stabbing pain and other diverse pain signals. She also suffers from terrible Allodynia/hypersensitivity (touch pain), which means that even the slightest touch like a sheet on her legs is extremely painful. Because of this she sleeps under a special metal blanket-lift that keeps the blanket off of her legs. Because of the severity of the CRPS and allodynia, Laetitia has become bedridden, housebound and wheelchair bound for these last three and a half years. She also developed tremors, a tic in her neck, spasms, skin change and light sensitivity (but the light sensitivity fortunately has become better this last year.) Life goes by on Laetitia as she ages. And there is nothing that she would rather like, then to be able to go outside, even if it would be raining. But for now she can't even bear a raindrop or the slightest breeze of wind on her skin.

CRPS

(Complex Regional Pain Syndrome) is a rare neurological dysfunction of the central nervous system that can occur suddenly after an innocent bruise or sprain in a limb. The nervous system becomes over-stimulated and takes on disproportionate forms and continues to send overactive pain signals to the affected body part, while this no longer corresponds to the original, physical injury. Sometimes it can even spread further throughout the body. According to the McGill Pain Scale (set up by a specialist in chronic pain diseases) it is the most painful condition ever recorded. It's also known as the Suicide disease! It has been determined by doctors that this pain is more painful than an anesthetic birth or amputation pain!

In the past 7 years Laetitia has done various, intensive treatments. Unfortunately without any positive results and some of these treatments even made her symptoms worse! According to doctors in the Netherlands, there are no further treatment options for Laetitia.

Before Laetitia got CRPS, she did figure skating, theater, dance and all kinds of activities. She loved to hang out with friends and have fun like other children of her age. However, since the accident, her life has completely changed and she lost her childhood and complete teenage years. The daily pain has put her in considerable social isolation, because she has little energy and all physical movements increase the pain. School is also difficult because of the little energy and pain that she has all day. All the things she used to do with a lot of passion, such as riding a bike, drama school, figure skating, playing the piano, meeting up with her friends and doing things, have been taken away from her by the CRPS! As a result, her world has become considerably small and this invisible condition now has taken almost every aspect of her life away from her.

As her mother I have promised Laetitia that I will do everything to find a treatment that will help her with the immense daily pain and that can give her a pain-free life back. With all my heart there is nothing worse than seeing your child be in so much pain and being stuck in a body that enables her to live her life.

HOPE

Finally after these long lasting three years of being bedridden, Laetitia has regained HOPE for a new treatment! :-) Neurosolution puts focus on the neurological aspect of CRPS and its role on the communication inside the brain and between its nervous system. Patients like Laetitia have gone to this clinic and were treated with great success and went home pain free! This treatment has given Laetitia new hope that she will finally get the chance to regain a pain-free life!

Because Laetitia can’t travel anymore due to CRPS, the clinic is setting up a Home care plan for her so Laetitia can start off with treatment from the safe space of her home. Therefore we need to purchase several medical devices that the clinic normally would use for treatment on location like a special Cold laser with a stand developed by the founder of the clinic and several other devices. In time when Laetitia will make progress, she needs to travel to the clinic for a more intensive program for a couple of weeks to stabilize her condition and do intensive rehabilitation. Laetitia is hoping to start treatment asap so she can become pain free and start living her life like a teenager is supposed to.

The health insurance policy doesn’t reimburse any of the treatments. To make it possible for Laetitia to start treatment a.s.a.p., she needs to raise money with crowdfunding.

HOPE ... is what keeps Laetitia going. Will you help her in her journey?

Thank you so much for taking time to read Laetitia’s story. Please help her regain a pain-free life. She needs help from everybody as much as possible! Your support through a donation, no matter how small, is more than welcome and please share Laetitia’s gofundme link in your network for a bigger reach for donations.

Lots of love,

Mariëla

Ps. It is also possible to send donations to our PayPal or our Dutch foundation .