Let me start by introducing them; Jane, the oldest one, is 20. Since the age of 6 diagnosed with migraine, always in and out of hospital, intestinal problems, lots of pains but they never found anything. Knee problems, luxations and eventually an operation to block her patella. Problems with the bladder, incontinence and retention, an operation to control the function of the bladder through a neurostimulator. When Rosa was diagnosed with hEDS in 2014, all her complaints came into sight and not long after she was also diagnosed with hEDS, POTS and ME. The picture is from better days.
Rosa, the youngest, is now 19; also in and out of hospital. She was a tomboy and all her little accidents and injuries were connected to that. Rosa was a sporty girl who loved nothing better than to be outside or to sport. Before it really went wrong she sported 14 hours per week, attended the sports class of secondary education HAVO/VWO, football, baseball, skating, she loved it all. Until is became really impossible and eventually in 2014 she was diagnosed with hEDS. A year later followed by the diagnoses POTS and ME. This picture is also from better days.
I was feeling happy, we now know what it is and we can do something about it! This thought could not have been far more from the truth. In the meantime both girls have a wheelchair, hand bike, smart drive, rollator, braces, a walker, loads of medications and the result is they are only getting worse. Up until the point you get into the state that if there is a day with an activity, the days before and after need to be planned as resting days. On those resting days even taking a shower is too much. Even stronger, showering also needs to be planned. Meanwhile, Jane and Rosa almost have had to give up everything. School, part-time job, and social life; everything is gone.
Jane is almost completely restricted to home; Rosa is still able to work 3 hours 3 times a week as a cashier in a supermarket. Which contains that the rest of the time she needs to lie down and that sometimes she doesn’t make it to get home after work. Than she stays with her grandma until she’s got enough energy for the last bit (5 minutes) back home. Once in a while we plan something fun, everybody sees the picture on Facebook and think things are getting better. But no one sees the back fall the days after, the tears of pain, the fainting due to overburden, the not being able to find the right words, the not being able to remember; those are namely the things you don’t want to share with everybody. And yet, I am now doing it; I’ll explain you why. Everyone who knows me personally knows I never ask for help. It is not in my nature, so to speak. But sometimes you have to go against your own nature, simply because there are more important considerations.
Because there is hope, hope to stop or even reverse the downward spiral the girls are in. And that can be accomplished by an operation; an operation by a neurosurgeon in Barcelona, the only one in Europe. More information about the neurosurgeon who can perform this masterpiece you can find at www.drgilete.com.
As I said earlier, we recently found out that both girls suffer from crania cervical instability, atlanto axial instability, hindbrain herniation (often seen as a chiari malformation) and, in Rosa’s case, not far from brain stem compression.
Wednesday, June 26th 2019 we took off to London to have the upright MRI, which showed that both girls suffer from severe problems and instability of the neck. Jane has got a heavy prolapse of the hindbrain (hindbrain herniation) and severe instability of C2 to C5. Rosa’s neck is extremely instable from C1 to C7; all the vertebrae move to all directions. She also has a, slightly milder, prolapse of the hindbrain and is very close to brain stem compression. Suddenly the situation is totally different. Their condition is not only severely invalidating and isolating but, in term, also life-threatening.
Than we come to the next problem. To be reimbursed for the operation in Barcelona you need a reference from a Dutch specialist. That specialist does not exist in the Netherlands. That is why the health care provider, due to lack of diagnostic knowledge in the Netherlands, just like the upright MRI, will not reimburse the operations. In short term the medical costs may be high, but in the long term it will definitely pay off. Not only medical healthcare wise, but also on the area of social benefit, custom home, and in the long term other costs for social security. In length of days I will namely not always be there to take care of them. Of course I do this with all the love I have in me, but also my life is not eternal. And the way it goes at the moment, they cannot take care of themselves. With the latest diagnoses I don’t even know who will live the longest. Because without an operation the complaints they have will only get worse and, eventually, one of those complications can be fatal.
And than I am not even talking about the quality of life. Studies namely show that most of the patients benefit at least 60% up until 80%; and that this result remains, seen in a follow-up study over 2 -5 years. With this progress they can pick up their education, sport, see friends, in short do normal things. Of course, the operation will not cure hEDS, a genetic disorder cannot be solved; but the pain and the luxation’s are not the things that hold back my daughters. It is the dysautonomic complaints (de-regulation of the autonomic nervous system) like POTS, the fatigue, the fainting, the brain fog, the severe headaches, concentration disorders and the memory problems that keeps them from living a “normal” life like every youngster. The complaints caused by the instability of the neck.
And than suddenly the amount you need is enormous. Because when both are diagnosed, we are not only facing one, but two operations. And to choose between the two of them is impossible. One week one is worse than the other; the next week it is the other way around. Rosa just comes from a period where she for months totally lost feeling in both feet and recently Jane’s cardiologist told her she has to lower her energy use from 10% to 5% because she exceeds her boundaries. No mother should be put in the position to choose between her children.
The neurosurgeon in Barcelona is prepared to plan both operations in the same week; in whole this saves a fair amount of the costs because one week before and two weeks after the operations we need to be in Barcelona for pre and after check-ups. If both can be operated in the same week it will surely make a difference in double travel and accommodation costs. But even than, the total amount needed is an impossible exercise for me. All my life I have taken care of my daughters all by myself and I have tried to give them everything they needed, without asking for help. But this is something I cannot achieve alone.
That is why, this time, I ask for help. Help from you, somebody I know, or help from you somebody I don’t know, to give my daughters their life back; help for a life where they can build a future for themselves. Help to raise the amount of € 160.000,00. The amount needed to cover the costs of the operations, the assurance of possible complications and the travel and accommodation costs. Help to give my daughters of 18 and 20 years a life fit for a human being. My stomach turns of this unbelievable amount and I still cannot comprehend. But I am willing to do anything in my power to make it happen. With your help.
Monique Blaauw, Jane and Rosa