English Translation of 1st swiss newspaper article.

[Guest guest]

Hi,

thanks to my sister in law - I have an English translation of the first

newspaper article, Which I posted before to the list.

Please Note - this is translated from German and some of the article

content is incorrect -

here is a link to a scan of the original.

http://www.thattimeoflife.smugmug.com/photos/139334254-M.jpg

and here is the translation

The most difficult thing is the everlasting sadness

OBERROHRDORF Cai, son of Kerstin and Ian Wilcox, was born with

Charge-syndrome. However the family copes with day-to-day living

confidently in spite of all the difficulties.

Lier –author

Cai Wilcox was born with a severe physical handicap. But his parents

don’t want to hide themselves away and they try to live as normally as

possible.

If you enter the living room at the Wilcox’s, it initially looks the

same as any other family. There are some toys lying on the floor, two

boys are running around the room. In the middle of this room there is a

little bed. It isn’t a normal one. On a trolley next to the bed you can

see several machines. There are big bags with lots of sterile-wrapped

suction tubes. Cai is lying on the carpet. He is 18 months old. Cai has

been born with Charge, a syndrome, that makes him different from other

children, He looks different, and is challenged by other problems.

Multiple sensual impairment

Kerstin Wilcox is comforting Cai. He’s crying. You can’t hear him. His

vocal chords are paralysed. He’s breathing through a canula that has

been inserted by the doctors through a cut in the windpipe. You can

only realise that he’s crying if you look at his facial expression or

if you observe the rhythm of his breathing. Kerstin Wilcox says: “After

his birth the doctors explained about Cai’s medical problems.” Kerstin

moves her arm as if she wanted to cut the air. “Everything was somehow

wrong.” After they had learnt about Cai’s situation they went home,

unplugged the phone, stopped the computer and didn’t leave the house

for three days.

After his birth Cai had to be transferred as an emergency to the

university childrens hospital in Zurich. There he spent five and a half

months and had to undergo several operations. Three times a day his

parents give him food by a button hole in his stomach because he is

unable to swallow. Cai cannot smell or taste. “Fortunately he is able to

see. But we don’t know how much he can hear”, says Ian Wilcox. He

continues: “So far the hardest part is over,” and he touches the wooden

floor several times.

Being under some strain day and night

Everyday life has changed a lot for the five members of the family

since Cai was born. He has to be supervised permanently day and night.

At 11 pm a nurse from childrens Spitex (external health care) starts a

shift to care for the little boy until 7 am. In the morning the father

goes to his job and the mother takes over the care of little Cai. Later

in the morning another nurse from childrens Spitex comes to help for

another three hours. During that time the mother goes shopping or is

busy with her household chores. Kerstin Wilcox: “We must be very careful

that Oliver and are not neglected . There is not much time for the

couple to be on their own. On one hand there is some strain in their

relationship because of the new situation, on the other hand they are

now closer to one another than before. “The most difficult thing is the

everlasting sadness you always feel as a parent of a handicapped child.

You can suppress it, but it will always come back again”, says Ian Wilcox.

Break out from isolation

Kerstin and Ian Wilcox want to enable Cai to live a life as normal as

possible. “People shouldn’t hesitate to ask what’s wrong with our child

or to look at him in his pram. They should know that there are children

who are different.” Until now there is no possibility in Switzerland to

discuss and share information about Charge. Kerstin Wilcox wants to

start a playgroup for handicapped children and their mothers. She has

found a suitable room at the ‘Pflegezentrum Baden’. ‘Kunterbunt

(Multicolored) – the alternative playgroup’ is the name of this new

group that provides the possibility to meet twice a month from now on.

Wilcox: “The intention is to break out from isolation and to meet other

mothers in similar situations.” – And the adventure of ‘Living with Cai’

goes on into an unknown future.

What is Charge - syndrome?

A rare pattern of severe medical problems

The word ‘Charge’ was created in 1979 and has been built with the

initial letters of these symptoms: C = coloboma, H = heart anomaly, A =

choanal atresia, R = retardation, G = genital anomalies, E = ear

anomalies. This means a deformation in the eyes, inborn heart failure,

the nose canal being blocked, reduced growing, retardation in general

development and deformities of the genitals and the ears. Beside these

main factors, children suffering from this Charge-syndrome are often

affected by many additional organ problems, which need to be faced by

several operations. Many children are not or only a little bit able to

see and to hear. They are also very often not able to smell and to taste.

[Guest guest]

That was wonderful and enlightening. Thanks for sharing that!

Bonnie, Mom to Kris 24, Patty CHARGE 22 and wife to

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