English translation of 3rd article in national swiss magazine

[Guest guest]

Here is the translation thanks once again to my sister in law of the

third article which was written about Cai and published last week in a

larger (1.5 million circulation) swiss magazine.

Typical for the press it has quite a few bits sensationalised and some

incorrect facts, eg there was no cuddly toy in front of Cai's canula, he

bent his head back and got caught in the bed etc but rather than

correct the facts we thought it achieved the purpose of raising

awareness of charge.

here is the link to the original article I posted

http://www.thattimeoflife.smugmug.com/photos/145030024-L.jpg

Ian - Cai's dad

The boy who is unable to cry

Life with a tube: No breathing. No swallowing. No laughing. No speaking.

The 18 month old Cai Wilcox from Oberrohrdorf is suffering from the rare

Charge-syndrome. To survive he needs some machines and his mother Kerstin.

written by Kutschera, photographed by Marcel Nöcker

It’s quiet in the living room. The only sound you can hear is of

wheezing. Each breath is a wheezing. It is caused by a canula, which has

been placed into Cai’s throat. He is breathing through this canula. The

nose of the 18 month old boy is blocked since his birth. Cai turns

around. The right corner of his mouth moves down a little bit, his

wheezing becomes faster. Kerstin Wilcox, his mother says: “ Something

bothers him.” A tear is running down his cheek. “He is crying.” But you

can’t hear anything. “Cai’s vocal chords are paralysed. He is dumb. When

he is crying, one can’t hear it.”

Cai is different from other children. The boy from Oberrohrdorf has been

born with the Charge-syndrome, which is a rare pattern of several

medical problems. In Switzerland there are only very few children having

this kind of illness, and there is only little knowledge about its

reasons. Mother Kerstin, 36, plays with her hair. “Looking at the

ultrasound images, Cai seemed to be a normal child. Otherwise I don’t

know what would have been my reaction.” Kerstin Wilcox, born as a

German, has been living in Switzerland since she was a child. In 2004

she had married Ian Wilcox, an EDV specialist from Wales. After Cai’s

birth at the Kantonsspital in Baden the doctors numbered all his medical

problems. Kerstin, being a medical assistant herself, remembers: “There

was nothing that was okay. Ian and I drove home without saying a word,

pulled out the phone and switched out the computer. We didn’t leave the

house for three days.” Cai had to be brought into the children’s

hospital in Zurich as an emergency. He stayed there for five and a half

months, undergoing several operations, one of them being a heart operation.

Even at the Wilcox’s it looks like in hospital. Father Ian, 45, says: We

transferred Cai’s playroom into our living room.” because Cai needs to

be supervised 24 hours a day. Right now he is lying on his bed, which is

a bed from hospital. With the help of a little machine his mother

Kerstin is sucking off some secretion. “His canula is a foreign body,

that’s why there is this secretion. It has to be sucked off regularly,

because Cai is unable to swallow.”

Five times a day he receives a bottle – being fed by a stomach tube.

Four times the machine is running for one hour, feeding him 100ml of a

mush made from bananas and carrots; the fifth time the machine starts at

11 pm and runs for seven hours. One hour before midnight a nurse takes

over the nightshift. Kerstin: “If Cai manages to pull out his canula, he

cannot breathe anymore.” That’s why his big toe is connected with a

monitor that is measuring his pulse as well as the quantity of oxygen in

the blood. In case of an emergency this monitor gives some signals

because Cai is unable to cry or to weep. Kerstin adds: “Only a short

time ago I had been working in the kitchen without having Cai connected

to the monitor. When I arrived back in the living room two minutes

later, Cai’s face had already turned blue. One of his cuddly toys had

blocked the canula.”

The mother stretches out her hands towards her son and smiles at him.

Cai turns his head slowly and looks back. Without any other movement. He

cannot laugh, he cannot blink, there is no change in facial expression.

He cannot smell, he cannot taste, he can’t hear very well. And only at

the age of three will he be able to walk. “We don’t know if he is able

to think. Fortunately he is able to see!” With the help of a language

therapist he learns sign language.

Everyday life at the Wilcox’s has radically changed since Cai arrived.

, 12, and Oliver, 9, are other members of the family, both sons

from Kerstin’s first marriage. As soon as the nurse leaves the house in

the morning at 7, Kerstin takes over. At 10 o’clock there is another

nurse coming in for three hours. Kerstin: “I then go shopping or work

around the house.”

Is there any time to be alone with her husband? Kerstin: “There is not

much time for us. The most difficult is this everlasting sadness you

feel as a parent of a handicapped child.” The relationship between her

and Ian is sometimes quite strained because of Cai’s illness. “On the

other hand these things have also brought us closer to one another.”

There is another point they have to be watchful about: “ and Oliver

should not be neglected ” both of whom love their handicapped brother

dearly. Oliver: “I love to be with Cai, I read stories to him. lately he

is able to rebuild my little toy towers.”

“The hardest time is over”, says Kerstin and looks out of the window.

“We hope Cai will live a long time. Maybe later there will be some

operations able to help him. She and her husband try to enable him to

live a life as normal as possible. Kerstin: “I do not hide him. I take

him with me to the playground. I tell the other people about Cai’s

situation. They should know, that there are children who are different.”

Kunterbunt (‘Multicolored’) is the name of ‘the alternative playgroup’

that Cai’s mother wants to start. It will enable parents with

handicapped children to meet. Kerstin smiles: “Only a few days ago Cai

clapped his hands for the first time. We are surprised about his

development. And we hope it will go on. Each little success is a great

gift.”

First page:

Moving

His story goes to ones heart: Cai is 18 months old. He cannot swallow.

He can’t smell, he can’t blink, he can’t cry. But his life knits the

family of Kerstin and Ian Wilcox from Oberrohrdorf close together.