Babies and children need to be cared for totally within an 8 feet square ‘Bubble’ of clean air, known as Sterile Isolation, for typically 6 months and more.  In many cases, therefore, the very sick children and parents need to cope with being uprooted to temporary hospital accommodation for months, sometimes leaving behind other children and jobs, adding to the tremendous stress already induced by the illness and uncertainty.

Finding a suitable bone marrow donor can be very time-consuming and difficult.  Without the best identical sibling match, the child needs to undergo chemotherapy before the transplant is carried out.  Bone marrow transplantation is a very difficult technique, with many potential complications, which can make the children extremely poorly.  Care is therefore provided by a highly developed team and nursing is very intensive, often on a one to one basis.

However, the reality is that in some cases, due to the severity of the children’s illness at the point of diagnosis, treatment can come too late for them and they die.

We help parents and families affected emotionally and financially by their children’s illness and death.  We would like to be able to offer the following:

Support for Bereaved Parents

Bereaved parents require a range of support on an individual, and where appropriate, a group basis, to help them live with their loss and learn to find a way of coping with life without their child.  To allow us to help these parents, we would like to offer over a year:

• visits to bereaved parents in their homes to offer support & identify additional needs
• access to Bereavement Course
• access to relaxation therapies e.g. yoga, relaxation techniques, aromatherapy, reflexology, reiki

Support for Parents and Families during Child’s Illness

It is usually the case that news of their child’s illness and its severity hits parents like a bolt and typically, parents arrive with their child as an emergency, by ambulance, with nothing more than the clothes they are wearing.  Once admitted, they face months, in what seems like a surreal environment, watching over their suffering child.  Often, jobs must be abandoned and additional expenses caused by the illness, add a further burden.  For this reason, we would like to establish a fund to help individual cases, such as:

• access to crèche facilities for patients’ siblings 
• support services for siblings e.g. we recently provided a childminder for a blind sibling, while the mother needed to be with her sick child on the Unit 
• access to therapeutic services e.g. yoga, relaxation techniques, aromatherapy, reflexology, reiki 
• interpreter services for parents from ethnic communities (40% of patients), who need to understand medical staff providing details of child’s condition and treatment
• travel costs to allow parents and siblings to return home during child’s stay in hospital
• fund for parents who arrive as an emergency and need to purchase items e.g. toiletries, clothing for them and the baby, household essentials, telephone call