Caroline (Patrick’s sister):

My brother showed great stability for the first 4 to 5 months and gained some functions after the operation. Last month I did notice some differences though and I honestly cannot say that this doesn't worry me. The differences are not as aggressive as we saw pre-surgery, but they are there.

My brother did gain the use of his arms after the operation (getting his arms up till his nose to scratch it and being able to roll the wheels of his wheelchair again in a limited way). This use has now vanished completely. He could not open his hands before the surgery, after the surgery his hands opened again. This gain is still there. Before surgery he could barely lift his feet (about 10 centimeters), after he could lift his feet to do stairs again. This function is still okay now. He gained the ability to walk with bigger steps (with assistance because his balance was off). Before the operation he could barely walk 20 meters and had serious difficulties to cross his feet.

After returning to our country, he began revalidation. On a walking machine he could walk distances of about 100 meters. This has become very difficult again as the rapidity has decreased and the distances are less. Until 1 month ago Patrick was able to swallow soup, mixed soft foot (a function which was possible before the surgery, but that showed difficulties just before surgery because of the danger in swallowing the wrong way. After surgery the swallowing in the wrong way decreased substantially). At this moment Patrick is no longer swallowing food through the mouth. He is still able to swallow soup, but is too afraid to swallow the wrong way, so this is limited. His speech was not too good before surgery and we had serious difficulties understanding him. After surgery this function did get a little bit better. Now he doesn't speak clearly anymore and uses his speech computer to express himself.

My impression is that the progress of the disease is activated again. I just hope that the aggressiveness will not be as it was before. When checking with the first operated person from our country who received the cells into the spinal cord and brain, he still is in pretty good shape and more or less stabilized. This confirms my initial findings that the operation makes a difference, but a 'bigger and longer lasting difference' when cells are injected in the spinal cord. I believe that the surgery with  then has more risks and not longer safe for all patients, due to the 7 to 8 hours duration under total anesthesia... but it surely shows better results for the patients that went through it.

(Ten months later)

Now we are about 10 months post surgery and at this point, Patrick is completely unable to move his arms or use his hands (function he regained after the operation in Beijing, but now lost). He doesn't eat or drink by mouth anymore, only uses a feeding tube (we only give him from time to time a little bit of water on the lips, that he doesn't need to swallow). He is still able to stand with help and still can do some steps if supported, but we notice that his strength in his legs has decreased and that his stability has done so too.

We still want to state that the aggressiveness of his disease has decreased if we compare it with his function lost before the Beijing surgery, but we have to state also that we notice that the disease has found his way back to his body and that it is winning slowly over his body.

Patrick needs suction very often now, his mucus is increasing and he is now at the point of having offset problems to cough up this mucus. He is still able to do so, but it is getting harder at this moment and he suffers, not only physically, from the difficulties when he has to cough up the mucus.

I am aware that even reading this is very hard for some of you, but the reality of living this disease has to be brought out into this world, so people could understand we need support, money for more and better research, quicker research... we have to find a way to search for a cure and hope it will be found as quickly as possible.