This is the story about my sweet daughter Laetitia of 16 years old.
For almost four years, since August 2017, Laetitia lives 24/7 with a severe and painfull disease called CRPS.
After an "innocent" accident in a swimming pool, it appeared at first sight that Laetitia had an innocentit bruise and sprained her knee and ankle, but recovery stayed out and it was the start of a nightmare what she was about to experience till this day.
Recovery took so long, that we suspected something was wrong. Her leg started to hurt more and more, and the pain took enormous proportions, so much that you couldn't even touch it, and there was no recovery ...
Since then, Laetitia has been living daily with great pain, which is a symptom of Complex Regional Pain Syndrome (CRPS).
CRPS is a disease of the nervous system that, for example, can occur suddenly after an innocent bruise or sprain on 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 physical injury. It is also sometimes possible that the CRPS spreads further throughout the body.
This also happened with Laetitia and the CRPS has spread further to her hands, wrists, arms, back and other leg and is almost fullbody. Laetitia her pain is daily on average at level 9,5 on a scale of 0-10.
Because of the CRPS she is now in a wheelchair and bedridden.
Complex Regional Pain Syndrome (CRPS) is a rare neurological dysfunction of the central nervous system and according to the McGill Pain Scale (set up by specialists in chronic pain deseases) 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.
Laetitia experiences pain as knife stabs, burning pain, thousands of needels stabbing pain and other diverse painsignals. She also suffers from spasms and terrible Allodynia/ hypersensitivity (touch pain), which means that even a sheet on her legs and / or writing is painful or the slitest breeze of wind is painful. That is why she sleeps under a special metal blanket-lift that keeps the blanket off her legs.
In the past 3.5 years, various specialists have applied all possible treatments to her. Unfortunately without (permanent) results.
According to doctors in the Netherlands, she must learn to live with this pain! How can you say that to a child?!
In 2019 Laetitia has become depressed, because of the daily pain and the enormous impact that this disease has on her whole life. Imagine... you are 12 years old, and you feel a pain in almost your entire body 24/7 that is comparable to an anesthetic birth or amputation pain!
Laetitia did figure skating, theater, dance and all kinds of activities. She would hang out with friends, had fun and was a real child. However, since the accident, her life has completely changed and she lost her childhood all at once. The daily pain has put her in a 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, are taken away by the CRPS!
As a result, her world has become considerably small and this invisible condition now has a lot of impact on her young life.
As her mother I have promised Laetitia that I will do everything to ensure that her pain goes away. I want to give her a pain-free life back with all my heart and that she can just be a normal teenager and start enjoying life.
I have found a specialized, intensive treatment in Arkansas for patients with CRPS that is aimed at repairing / resetting the nervous system, which reduces the pain and couses the CRPS to go into remission. Patients from all over the world come to this clinic and 84.5% of the patients are treated with great success and go home pain-free!
This treatment has given us new hope that Laetitia will have the opportunity to regain a pain-free life!
At this moment Laetitia is getting this treatment, but because of her severe case, she needs more time to complete the treatment with succes and to become painfree.
The health insurance policy does not reimburse any of the treatments that she is getting now and that is why I am in need to raise money for the treatment, travel costs, housing during the treatment and the purchase of a medical device which we must maintain for aftercare ourselves afterwards after returning home.
The slogan of the Spero Clinic is: "While I breathe, I hope" ... and that is what Laetitia has finally found back with this treatment!
We need your help!
Please help support Laetitia regaining a pain-free life.
Your contribution, no matter how small, is very welcome including also sharing this link in your network.
Thank you for the opportunity to give Laetitia a painfree life!
Lots of love Mariëla en Laetitia