Hessel Anne T.

Hessel Anne T. (Netherlands)

We are Liesbeth Jonker and Fokke Tros. We are the parents of our four year

old son Hessel Anne. We live in the

Hessel Anne was born on the 2nd of may 1998 in Leeuwarden, a city in the north of Holland.

At first Hessel showed
no signs of being ill. Unfortunately after six weeks he was hospitalised. Hessel had bouts of fever, severe cramps
in his extremities and his body was very rigid. The doctors ran several tests on him including an MRI and CT-scan.

At first the doctors thought he had a viral or bacterial infection. This however turned out to be not the case.
After six weeks in hospital our paediatrician was not able to establish exactly what was wrong with Hessel and he
was sent to an academic hospital in Amsterdam.

In the meantime we also discovered that Hessel suffered from a severe cow milk allergy, which put him into a state
of shock. Up till now, Hessel doesn't get any products with cow milk in it.

In Amsterdam the doctors diagnosed him to suffer from the syndrome of Aicardi-Goutières. The first two years
Hessel was very ill. He kept on having these severe cramps in his extremities. The only way to ease his pain was
to keep him very close to our body and by walking the house up and down with him. Hessel couldn't stand laying on
his back so he always slept on his stomach (and on our stomach) For a short period of time Hessel was given a kind
of prednison in order to reduce the amount of interferon-alpha in his brains. After a three months we decided to
stop giving him this medication because each time Hessel had taken in his medicine he became terribly ill with
the side effects. Fortunately things started to change for the better after two years. The cramps slowly
disappeared and he started to develop.

Right now Hessel is four years old. Now and then he has short periods of fever which cannot be explained. But most
of the time he is a happy, high spirited child. Hessel is physically handicapped. He cannot sit, crawl , walk or
use his hands without the use of aids.

When Hessel was about two years old we finally found a type of chair in which he was able to sit without too much
distress. Before, there was no other possibility than to carry him with us all the time. The trick that made this
particular chair a success was that it tilts forward. Hessel leans forward while his chest rests against a support.
This position strengthened his back- and neck muscles. Consequently he improved his head control. When Hessel was
two and a half years old his physiotherapist at the rehabilitation centre asked us if we were interested in a kind
of device, the Walker, which would enable him to walk. Now with the use of his Walker, Hessel is able to walk
short distances. A dream has come through!

At first we thought Hessel would be severely mentally handicapped but now his speech therapist estimates him to
have the mental capability of a three-year-old. Hessel cannot talk but he is able to say "yes" and shake his head
in order to say "no". By use of a book with pictographs he is able to indicate what he wants. Recently he has also
started to point at things he wants and starts to express himself by using sounds. Every day he astonishes us by
what he can do and understand. Hessel can be very sweet but also very naughty and we, like every other parent,
think he is the most beautiful, sweetest and funniest kid in the world!