Was born with a mysterious illness which has never been fully diagnosed and described in academic circles even though we his family have done many genetic and other tests.
The only evident sign was that he was born was with a malformation of his jaw, he had and still has a receding chin.
The box with his medical records has travelled to many hospitals in Italy, Europe and the United States, but nobody has ever been able to give a name to this mystery, a prospective or a hope for a cure, it remains elusive. Nobody has ever seen a case like his. He has an ultra-rare disease. The only thing that is certain is that some of Hervé’s cranial nerves don’t work as they should. These are particular nerves that start directly from the encephalic trunk instead of starting from the spinal marrow, which are necessary to do many things such as swallow, suck, cough, grimace and move the eyes. These things Hervé cannot do or has difficulty in doing. We have never been able to feed him with a bottle and he has never been able to smile.
Moreover he has very little strength in his muscles and nobody can explain why. Hervé has a poor control of his head, he can’t stay sitting, he can’t hold a toy in his hand even for a few seconds. However he can use his legs to move himself in a special walker, following his sister and going where he wants to, even passing through doors narrower than his walker. A unique case in the world, as doctors say.
Emotionally he has developed quite well, but communication is very limited. He has problems with his eyes; he can see but he can’t hold his gaze for long, in the same way he can’t point with his hands.
We try to carry on living as a family the as best as we can. Making sure his life is the best and as fruitful as possible, that his elder sister doesn’t live under the shade of his illness, to make sure that at least she is not affected by this situation because we are already shattered and mentally battered.
Rare diseases are rare, but they must happen to somebody. It was Hervé’s turn this time.
Disability, in Italy, is a family matter, especially when the disabled person is a child and when the condition is serious.
We discovered this when Hervé was born, affected by a highly invalidating disease. Our son is nearly three years old and from birth has needed continuous specialized assistance, day and night.
He lives due to technological progress in medicine. This same progress has not been made by the social and health policies in Italy.
Our son lives at home with us and we, as a family, do as much as we can to guarantee best conditions in life for him. We do all we can to continue to exist as a family, but we don’t want his disability to be only our concern, we have a daughter who has dreams and ambitions too!
We’d like to be supported by the State with appropriate services to guarantee his safety and at the same time a life for us our family. In the last two years the public institutions have been evasive and we keep running after them to have the home services we need for Hervé.
We know that in Italy there are families that have been asking for help for a much longer time compared to us, others have given up for the lack of funds or time because meanwhile their family has split up, others still don’t know that they can ask for and obtain the entitlement to be assisted.
It all began with Herve’s birth on the 7th of November 2014. After nearly two months in hospital he was discharged with an integrated home care. This is used by the national health service for those patients who are no longer in a critical phase and can be cared for at home.
We were supplied with indispensable devices for his survival. At home we assisted him, having learnt manoeuvres that we could have never imagined learning to guarantee our son’s wellbeing; the use of the oximeter and the use of the nasogastric tube to feed him because he can’t swallow and an aspirator to free his airways so that he doesn’t suffocate. We have become near perfect nurses, when we would only like to be parents and enjoy the peaceful moments that a parental role brings.
Our first applications to the health service was to have a nurse at home for a few hours a day to give us some relief, this failed. In the spring of 2015, when Hervé was 6 months old and his sister was four years old, we were thrown in the middle of a very serious and delicate situation.
We discovered that home nursing services were not included in Hervé’s individual program of home care and, according to the local health services, it was not possible to include it.
We were prisoners in our home.
Hervé hardly ever left our home, his movements were limited to hospital check-ups. We never went out of the house as a family. Hervé was attached to an oximeter which helped his breathing and we often had to suck up the excess of secretions and saliva so that he didn’t suffocate. That was every 20 minutes and sometimes more often.
Time, effort and anguish were exhausting us, not so much physically but psychologically. Seeing your own child between life and death is devastating. We lived suspended in this situation practically on our own and the more the time passed, the more we understood that there was no solution, there was no cure.
He cannot get better, the only thing that we could and can do is to take care of him.
One question we often asked ourselves was “Is it possible that the system is leaving us on our own?” and “How long can we resist?”.
You nearly always hold on, or maybe not. In these first years of Hervé’s life we have seen many tragedies due to the abandonment of the families that were living in a critical situation.
When Hervé was about one year old, his condition was still serious, but stable and so we tried to apply for him to go to kindergarten.
We asked the institutions to be organized to handle Hervé’s health situation, feed him with a nasogastric tube, effect aspiration and help him keep a correct posture at school.
Again, there was no concrete answer, so Hervé never went to nursery. He was destined to stay at home. And what about us? We had to stay with him.
What kind of life can a family with such serious problems to affront have?
In Italy it often happens that mothers don’t go back to work anymore in similar situations. It is their choice, but they also do it because they can’t see any other solution or there is no alternative at all. They don’t get a sufficient support from the national health service and therefore they stay at home to look after their disabled child.
Usually these people are called caregivers, but Italy is one of the few countries in the European Union that don’t acknowledge such a role in any way. These are people in the family unit, who relinquish their own life to take care of a person who is disabled.
There aren’t many studies or statistics about the caregiver’s quality of life. We don’t even really know exactly how many they are. They are considered to be unemployed, even though they spend all their time taking care of a fragile member of the family.
Mother and caregiver
I always imagined that sooner or later I would go back to work. In every situation, one must continue to live and I wanted to be a mother to my children and not just Hervé’s caregiver. I did that for a while, but over a long time you cannot cope, it mentally exhausts you. When I told the health service my wish to go back to work for at least a few hours a week and so the need to find a solution to look after Hervé in my absence, I was told that there was no solution.
I couldn’t go back to work because I have a seriously disabled son that needed home care and I had to do it. They told me that, in Valle d’Aosta, home help services hadn’t been set in motion to help families experiencing similar circumstances to ours.
I shouted that it was discriminatory, that everybody should be able to decide, that I can’t psychologically stand this situation anymore, it’s humanly impossible. I did this for a few months, but my voice didn’t change anything. When Hervé was 14 months old, we employed a private paediatric nurse for a few hours a week, to try out the possibility of leaving our son at home in complete safety.
The cost of a professional nurse, enrolled on the medical register, who can, according to the law, carry out medical duties (feed, aspirate and guarantee safety) is very high. In March 2016 I went back to work and the nurse stayed at home with Hervé for 15 hours a week. We paid and in the mean time we kept applying for welfare services at home.
In the end, after much effort, the health service adopted a solution for a year with a regional contribution. It was an experimental project which reimbursed most of the expenses of the nursing care. A year to monitor the situation and decide what to do.
Due to problems with the public budget there were delays in repayment s and we had to pay a lot of money in advance for the welfare services to safeguard our son.
In January 2017, three months before the end of the project, we asked to have information about the monitoring of the experience with the nurse and the future solutions to adopt, but we didn’t receive any tangible answers.
The home care project ended on the 31st of March 2017 and with tremendous effort and six months of delay, has been approved for another year (until 31st of March 2018). This is a very poor and precarious solution, which does not guarantee serenity, in fact creates uncertainty about the future. To ensure continuity of the home care project we had to anticipate more than € 10.000 without knowing whether they will be reimbursed by Public Services.
Nobody asked us as parents if we were capable of guaranteeing this type of home care all of the time: psychologically, physically and also economically.
As a family, can we do it? Nobody asked me as mother and woman, if I want to be a caregiver, taking the place of the health services in looking after a disabled 24 h a day, without any rights to a personal or professional life.
I think that no family can manage on its own, that the institution can’t ignore us and not care about the rights of the disabled and their families, in particular of the women that often have no choice.
Help us to defend ourselves from a system that, for more than two years, has been destroying us as a family, as people and as citizens.
Help us to also help other families that live in similar situations, in silence and alone. We know that they are out there, that they need help, voice and courage to dare to change.
After many months of seclusion and desperation caused by an inefficient system, I as mother and woman, decided I didn’t want to stay silent anymore, that the story of our family and Hervé will be the starting point. For months we stood up for ourselves, but now we have decided to create the Non-profit Organisation, for us and for all those families that cannot cope anymore, that haven’t enough strength, means or resources to claim their rights.
This No-profit Organisation was created to support the families with seriously disabled children for who the Italian national health system doesn’t provide adequate solutions to guarantee the best welfare and home care and preserve family life.
Agnieszka and Patrick, parents of Hervé and Anaïs.
Please share our story.
Read how you can help us! There are so many ways!
Read more about La casa di sabbia No-profit Organisation