Charleigh Jayne
Berlin Heart Fund
This fund has been set
up to raise money for families with children on the Berlin Heart. The Berlin
Heart is a mechanical pumping unit which sustains the life of those waiting for
a transplant; it is often referred to as a bridge to transplant, and patients
on these devices would not survive without them.
Children on the Berlin
Heart often spend months at a time in hospital, the current record is 273 days on
this device, this does not include time before the Berlin Heart was chosen as a
means to ensure their survival, or the period in which the child recovers from
their transplant.
For the families of
these children it means that they are separated for extended periods of time
from their immediate family members. Usually accommodation at hospital is only
for one parent, some children have to travel hundreds of miles for this
treatment as currently the Berlin Heart is only available in 2 hospitals across
the country. This can cause financial hardship for the family as often the
second parent/carer will need to reduce working hours or give up working
altogether to care for other siblings, the parent staying continuously at the
child’s bedside is also unable to work. No parent should have to worry about
their bank account and bills whilst their child faces life or death.
The Charleigh Jayne
Berlin Heart Fund aims to provide financial help to the families of those
children, by helping with travel costs, utility arrears accrued whilst a child
is on the device, and help towards rent or mortgages and to support these
families to budget with the rising costs of a long term stay in hospital.
Our ultimate aim is to
raise enough money to provide accommodation so that all members of the child’s
family can spend time together at weekends, birthdays, religious holidays, and
so that the parent that is continuously at the child’s bedside can have members
of their family be with them. It is a long and hard journey on the Berlin
Heart; we believe that no person should be alone during this time.
The Charleigh Jayne
Berlin Heart Fund will also promote the importance of organ donation and
awareness of CHD at every possible opportunity.
#chick
#organdonation
#CHD aware
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