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Who are we?

We are an ordinary family, living in The Netherlands, father Eric, Mother Irm, daughter Vivianne and son Thomas. As a family, we are confronted with a child with an illness, in our case Thomas. With that, we do not differ from a lot of families who have to deal with ill children. But perhaps the difference is that Thomas suffers from a severe and rare muscle disease. Although the diagnostic test are still in progress, it is almost sure that he has Hypokalemic Periodic Paralysis.

 
 

Due to his illness, Thomas is very often fully paralyzed. How this happens can be read in Thomas' illness, but basically, Thomas is unable to do the things that a 17 year old kid normally does. For example, he cannot go to school on a normally base. The paralysis' are mainly at the beginning of the day and extend to somewhere around 3PM. From that time he is able to move and can move around inside our house. Normally, that is the time that he starts with his homework to keep up with his class mates. Unfortunately, this is not always possible.

It happens that Thomas has a 'cloud' in his head due to the hypokalemic period. Then, he is not able to think clear whereby he can only start with his homework at a later time, or even is not able to start.		  
 

What does that mean for us.

During the mornings, we have to take care that Thomas' condition not decreases. Therefor he receives medication that is potential lethal for 'healthy' people. the dosage has to be found experimentally and changes from time to time. Based on subtle signs, we daily try to get Thomas out of the paralisys period.

As You can understand, it is for Thomas not possible to go to school.

As soon as he gets a little bit better, he starts with his school activities in his room. He does his homework, does his lab work and prepares itself for the school tests. He does this all by himself. A real autodidact, but sometimes he needs some support to understand the theory he missed.

Fortunately, Thomas' father can provide this support. He can explain the theoretic parts of lessons and helps doing the exercises. Due to that support, Thomas is able to do all the school tests. The school board has confidence in us to make sure that the tests are done at a honest way and under 'school conditions'.

As parents, we made appointments with the school board that we will handle the strict 'school conditions' during the tests. But, is shows that Thomas is capable to generate good grades (B+ or even better).

 

What is different?

The medication needed to overcome a paralyzed period is potentially lethal. When misused, it can cause heart failure. There is not really a reliable method (except hospitalization) to measure how much medication Thomas needs. Besides, during his paralysis, Thomas cannot tell exactly how much medication he needs. By experience and by strict observation, we have to figure out if Thomas has had enough medication to overcome his paralysis.

Medication alone is not sufficient. Next to that, Thomas has a very strict diet. It seemed that food one of the main triggers is for starting a paralysis attack. Once started, it may take several hours (to even days) to overcome a paralysis attack.

 

 

  
 

Who is Thomas?

He writes the following about himself:

Heey,

I am Thomas. As You probably already know, it is my Christmas wish to go to Orlando in the United States. I like to visit a conference which handles over my muscle disease. Next to that, I would very much like to visit the Oakland Athletics mcAffee stadium. This is the baseball stadium where my favorite American Baseball team plays. Certainly this choice of team has to do with the fact that I played in Hellevoetsluis, my home town, in a team called Hellevoet Atheltics!

I played about three and a half year with the Hellevoet Athletics. I discovered that it became more difficult over time to keep track during the trainings and the matches. Even though it was a lot of fun, it was frustrating to only be able to train for fifteen minutes of the two hour training. At the end, I decided to stop playing.

Forced by my muscle disease, but also pushed by my parents, I got more and more involved in computer technology! Nowadays this is what I can do best. Fortunately, I passed my entrance exam for the field of study 'Media Technology' at the 'Grafisch Lyceum' in Rotterdam. This has all to do with the creation of software and the controlling of computer networks. Really something for me!

Hopefully by attending to the conference, I learn even more tricks to cope with my disease! I am a really positive person, but that does not mean that it is not difficult from time to time to handle all limitations. For me it means to accept the limitations, although that is, all together, not easy to do.

Hopefully You will support me to fulfill my Christmas wish!

Thomas

 
Thomas in better days