Extremely difficult life for caregivers of children and adults with rare diseases. Appeal to the government

"For the first time in seventeen years, my wife and I have not been waiting for a phone call that something is wrong with our son." These are the words of Jacek Rajnowski-Janiak, the father of seriously ill Filip. This is not a moving quote from a report. It is a cry of relief and gratitude - understandable only to those who share their daily lives with a terminally ill child. For them, respite care is not a luxury. It is a need. This was loudly discussed in Parliament during the meeting of the Parliamentary Team for Rare Diseases.

Rare diseases affect a select few, but their effects devastate entire families. Although a single disease entity may occur once in 50,000 people, it is estimated that as many as 300 million people worldwide live with a rare disease – including 30 million in Europe. In Poland, these are hundreds of thousands of children and adults whose fate poses completely different questions than "will I make it to the bus". Here, the questions are: "Will my child survive another crisis?", "Can anyone help him?" and finally: "Will I survive this alone?"

Most rare diseases have a genetic basis and affect the youngest. Among them – children with multiple disabilities, profound developmental deficits, often non-speaking, blind, fed by PEG, requiring 24-hour medical care. Their parents call their journey a “diagnostic odyssey”, lasting an average of five years. Sometimes it ends with a diagnosis, more often – with helplessness. Because even if the diagnosis is already made, treatment is usually lacking. Only 7% of rare diseases have causal treatment available today.

Families of terminally ill children function in constant stress, isolation, economic and psychological overload. Quite often one of the parents gives up work, and family life is subordinated to one person – the sick child. Even if loved ones want to help, they do not always have the courage or competence to take care of a child whose health condition requires medical knowledge and great caution.

Respite care is not a reward. It is a necessity. – “For the first time in seventeen years, we were not paediatricians, pulmonologists, nurses and drug suppliers for a moment,” says Mr Jacek, who with his wife was able to leave his son at the specialist centre “Kokoszka”. Such places are rare in Poland. And they should be the foundation.

It is temporary, short-term care for a person requiring constant support - so that the caregiver can rest, regenerate, take care of their own health, and sometimes simply go for a walk, sleep through the night, or take care of another child.

In facilities such as “Kokoszka” in Wrocław, respite care is not just “keeping” the child. It is specialized, coordinated care carried out in the spirit of hospice, focused on six foundations: so that it does not hurt, so that it does not feel stuffy, cold, hungry, so that it does not feel afraid – and so that it does not feel alone.

A child who goes on a stay does not go to a “place”, they go under the care of a team: doctors, nurses, caregivers, therapists, psychologists. People who are not afraid of difficult cases, who know the needs of the child and medical procedures. Thanks to this, the parent knows that they can rest – without feeling guilty.

Respite care is also about something more – about changing thinking. About giving parents space to see that the world does not end when they are not at the bedside. That they can – even for a moment – ​​be partners, friends, women and men again. And that they have the right to support, not only as “patient carers”, but as people.

Healthy siblings often remain in the shadow of a sick child. Children who grow up with the feeling that their needs are less important. Hospices that also run support groups for siblings - not only after loss, but also during illness - show how important it is to look at the family holistically. Because one sick child is a tragedy for the whole family.

Respite care cannot be treated as a charitable supplement. It is an element of the healthcare system and social policy. For too long it has been based on foundations, goodwill and grants. Meanwhile, as data and expert opinions show, it is support that can protect thousands of families from collapse, burnout and tragedy.

Parents don't want much. They don't ask for a miracle. They ask for the opportunity to rest, to breathe. They ask for the system to notice them - not as "parents of a child with a certificate", but as people who are doctors, therapists, nurses, cooks and silent heroes of everyday life 24 hours a day.

And it shouldn't be invisible.