The Swedish Heart-Children's Association
The Heart-Children's Association is for You, who have a child with a congenital heart
disease. The disorder may be serious or uncomplicated. If You are young and You have a
heart disease, You are welcome to join the youth section of the Association, "Young
Heartbeats". You could have been operated on or still have your heart disease, in
either case You may have use of meeting others of your own age and in the same situation.
The Heart-Children's Association also welcomes You, who just would like to support us with
Your membership.
The Heart-Children's Association is a national organisation, working voluntarily to
-
improve the conditions for children and young people with heart diseases and their
parents.
-
spread knowledge and information about children with heart diseases
-
actively support and help children and young people with heart diseases and their
families to get in contact with each other.
People who are or have been in the same situation need each other. We feel safe to know
that we can contact and meet one another, especially during hard times. Everywhere in our
country, the Heart-Children's Association have so called contact-parents present. These
parents have children of their own with heart diseases. When You feel the need to talk to
somebody who understands, You can call or meet these parents. They are there for You and
are happy to help. Our organisation also has contact-parents with special experiences in,
for example, children with Down's syndrome, children who have been damaged as they were
operated on or children who died from their heart diseases. The contact-parents arrange
different meetings, sometimes with physicians, social workers and other guests who can
give information and answer questions. Sometimes we just have fun together.
Weekend meetings are arranged for members from all parts of the country. At these
meetings, groups of parents with something in common get together. They may have children
with particularly serious heart diseases, children who have become handicapped because of
an operation which failed or children with Down's syndrome. Some parents may have children
who have died as a cause of heart disease.
In the summer, the Heart-Children's Association arranges so called family weeks. Here,
parents with a special profession participate as leaders. A leader could be eg. a
psychologist, a physician, a nurse, a social worker or a psychotherapist. During the week,
parents to children with heart diseases have the opportunity to talk about their
experiences and problems in groups under professional guidance. Meanwhile, the children
are looked after by parents who normally work with youngsters. The family weeks also offer
a lot of fun! One family week is located in the warm south. There, the children can play
and swim outdoors and the parents have time for good recreation.
The members of "Young heartbeats" get together at the weekend meetings
described above. They also meet young people with heart disease from the countries
Denmark, Finland and Norway at a Nordic Youthcamp. Downhill skiing is a popular activity
good for young people with heart diseases. Children who are ten years or older may, under
the guidance of parents and a nurse, go to special camps without their families.
Brothers and sisters to children with heart diseases may need to meet one another to
talk. At the Heart-Children's Association's yearly conference and at some weekend
meetings, we arrange programs especially for brothers and sisters.
Through cooperation with those who professionally work with children with heart
diseases, we try to train ourselves and others in various subjects. Courses are also
organized to educate preschool-, school- and hospital staff.
Families, who have a child with a heart disease, often face a number of problems in
society. In order to actulize these problems and to solve them, we must make our voice
heard and existence known. Therefore, we write, call and talk to politicians and hospital
management staff.
At the office of the Heart-Children's Association, there are advisors You can call or
write to. The advisors are happy to provide You with further information of the
contact-parents, the members of the organisation's committee and those who work in the
various groups in the association.
The Heart-Children's association is there for You!
Hjärtebarnsföreningen
Box 9087
102 72 STOCKHOLM SWEDEN
Tel: + 46 8-442 46 50
Fax: + 46 8-442 46 59
E-mail: kansliet@hjartebarn.org