I have pondered
Enough is enough
It is going to be a tough fight
I am sad
My name is Tanja, 35 years and living together with Simon and our kids of five and two years old in the Netherlands. 3 Years ago I started the blogsite “Mama with MS” to share positive experience stories under the alias “Elisa” because it was all about the message and not about myself. Never I could have imagined that Mama with MS would become a foundation, but on the other hand, I also would never have guessed that this disease, Multiple Sclerose, diagnosed in 2014, would have such an aggressive course. Now I’m going to drop my veil. I am no longer Elisa, I am Tanja and I need help. Time is ticking… I need a stem cell transplant abroad.
I knew that there is a treatment abroad to keep an eye on and possibly to undergo ‘as soon as both kids are in school’. It is now clear that I do not have the luxury to wait that long. Even though it may not always be visible on the outside, all body functions begin to slowly deteriorate. Arms, legs, intestines, eyes, speech, not to mention the debilitating fatigue. For a long time it has been the case that the care of the children is quite a task and that this often comes to Daddy. “How long can I be a mother to my kids? How long before I have to be cared for myself? Will I be bedridden soon or away from my family at a young age in a nursing home?”
I have a form of MS (Relapsing Remitting) which occurs in flares, so I have regularly experienced how shocking it is when certain body functions completely fail. I am happy that some complaints improve when the flare is over, but eventually there will be so much scar tissue on my brain and spinal cord, that overtime the complaints and limitations will remain.
Lately it has become clear that a continuous decline has begun. Now that it is not too late, I want to intervene the course of this disease. I am on the waiting list for a stem cell transplant in Moscow and Mexico (HSCT treatment), hopefully even within this year. Unfortunately this treatment is not performed on patients with MS, eventhough 80% of MS patients benefit from this treatment. The total cost for this treatment is at least € 70,000 and unfortunately we do not have enough savings and need to start crowdfunding.
I would like to be in the first group of Dutch MS patients who have started this adventure and to offer a positive perspective, but also with the hope that treatment will be possible for the next generation of MS patients in the Netherlands.
“Foundation Mama with MS” was founded to raise the amount of €70.000. Would you like to help us?
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