HELP Laetitia get her life back from debilitating CPRS pain

Hi dear reader,

This is the story about my sweet daughter Laetitia. This year (2024) Laetitia turned 19 years old and it was the third year in a row, she didn't want to celebrate her birthday, as Laetitia sees herself aging without being able to live her life.

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 start of a nightmare that Laetitia was about to experience till this day.

First her leg started to hurt more which would be followed by neuropathic pain attacks. Her leg and ankle were swollen and couldn’t even be touched and the pain started to take enormous proportions. Finally after more than two years Laetitia got the diagnosis CRPS.

Since 2019 the CRPS has spread to her hands, wrists, arms, back and left leg and is 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, shooting, throbbing, stabbing pain and other diverse pain signals. She also suffers from spasms and terrible Allodynia/ hypersensitivity (touch pain), which means that even the slightest touch or a sheet on her legs is extremely painful. Because of this she sleeps under a special metal blanket-lift that keeps the blanket off her legs.

Because of the severity of the CRPS and allodynia, Laetitia has become bedridden, house and wheelchair bound for these last three years. She also developed tremors, a tic in her neck, spasmes, skin change and light sensitivity (but that 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 (CRPS) 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 specialists in chronic pain diseases) it is the most painful condition ever recorded. It's also known as the Suicide desease! 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 even some of these treatments made her symptoms worse! According to doctors in the Netherlands, there are no further treatment options for Laetitia.

Laetitia did figure skating, theater, dance and all kinds of activities. She would 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 all at once. 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 cycling, 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 three long years of being bedridden, Laetitia regained HOPE for a treatment! :-) This treatment 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 her new hope that she will have the opportunity to regain a pain-free life!

At this moment 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 didn’t reimburse any of the treatments that she has had these last years, so the initially raised amount of 8324 dollars has already been spent on former treatments.

At this moment I have to start all over (see old amount 8324= actually 0) with raising money for this new treatment. Because Laetitia can’t travel anymore, the clinic is making a Home care plan so Laetitia can start off with treatment from the safe space of her home. Therefore we need to purchase several medical devices like a Cold laser with a stand, a Stimpod, an InterX 5002 Pro with a dual 3x3 flexible array and two other devices. But we are grateful as we already got those last two devices sponsored.

HOPE ... is what keeps Laetitia going.

Please help Laetitia regain a pain-free life.

These last years the intensive care for Laetitia has been given by me personally as Laetitia doesn’t want any else around her and that has taken a toll on me personally as well. So I need help from everybody as much as possible.

Your support through a donation, no matter how small, is very welcome.

We also hope you will share Laetitia’s need for help with this link in your network and create a bigger possibility for treatment as they might donate to this gofundme.

Thank you for taking the time to read about Laetitia’s story and to support us by giving her a painfree life!

Lots of love Mariëla en Laetitia