Julian wrote to one of Emilia's consultants, 'We have been prepared for Emilia's death and, whilst we have not given up hope, we do understand her condition is rare and difficult to treat.' It is a club that no parent wishes to join: parents facing the loss of their child. The Palmer Children's Trust focuses on the journey that many will have to make from early diagnosis of a rare disease, to discovering that there is little medical knowledge of the rarer diseases affecting children, to mitigating the effects of the disease as best as can be achieved and to facing the last few days of a child or young person's life.

Improving the quality of life

A child faced with a life threatening or terminal illness may find him or herself spending great periods of time in hospital, may become more immobile, may not be able to participate in activities she or he once could or longs to do something new and exciting.

For children having periodic or long stays in hospital we are happy to offer iPads and/or Kindles.  Children and young people will be able to keep in contact with their friends, keep up with news through social media, and while away the hours connected to a digital world rather than stuck in hospital.

For those children and young people who may find themselves needing medical equipment at home that the NHS may not supply or just wanting, perhaps, a pink wheelchair rather than a black one or specially adapted play equipment, we offer a ‘use and return’ service of equipment that may be used again and again to improve the lives of ill children and young people.

We are working with Birmingham Children’s Hospital to offer rehabilitative therapeutic help beyond the scope provided by the NHS for a number of its patients suffering from respiratory diseases.  As our funding streams increase, we shall expend more money in this area and work in association with other paediatric hospitals across England and Wales.

With help from the UK’s leading gift/experience company, ill children and young people may enjoy an experience of a lifetime for themselves or treat their parents, guardians or carers.  Be it pony trekking, a supercar or tank driving experience, balloon rides, a spa day for mum or a golf day for dad, we are here to provide respite from illness and experiences that will brighten even the darkest of days.

Far from home in and out-patient attendance

With specialist paediatric centres across the UK, ill children and young people may need to be seen by consultants, assessed for transplant programmes or receive therapeutic treatment far from home.  This necessitates costly travel and accommodation, if not for the child or young person then for his or her family.

Liaising with the relevant hospitals, we coordinate the travel and accommodation of ill children, young people and their families through a network of taxi companies, rail providers, hotels and restaurants that each provide their services at heavily discounted rates or for free.

Families with inadequate means to meet the costs of travel, accommodation or subsistence have access to our fund where we may pay up to 100% of the costs associated with attending an outpatients’ consultation, treatment or assessment.

Research into rare diseases

By their nature rare diseases are often not fully understood because of their complexity and result in late clinical recognition, leaving the child or young person and their parents, guardians and carers feeling isolated and vulnerable.  75% of rare diseases (affecting 5 in 10,000 patients) affect children.  We want to bring that percentage down.

We are working hard to support highly translational research which will lead quickly to improvements in diagnosis, prognosis, patient care, treatment and cure.

We have made our first research grant 6 months ahead of schedule.  We hope to offer further grants for multi-disciplinary projects that have an impact on the delivery of paediatric health services: in the first instance our focus will be on respiratory diseases.