Letter on behalf of parents to other parents
We all felt an enormous shock when we were faced with the fact that our child was affected. The number of letters in the name of the disease in itself evoked a very complicated disease. After many sleepless nights, after many « whys » and finally the reality of the diagnosis, a multitude of questions come to mind:
- What is going to become of our child?
- How is he/she going to deal with the treatment?
- What are the side effects going to be?
- What are his/her chance of recovery?
- How will he/she be able to live with this handicap?
Like many of us, we had the reflex to question other parents in the same situation, to seek out information sources and information from professionals, or to look for an understanding soul to speak with and to look for moral support from close friends and family members. In order that our experience help others, we decided to establish an association.
The objectives of the Rétinostop association are the following:
- To come to the aid of families
- To support research on retinoblastoma and to participate in equipping treatment and diagnosis centers
- To promote early diagnosis and to make the disease more well known among health professionals and government administrations
- To facilitate parents meeting to share their experiences, their hardships and their hopes
Aid to families
This firstly involves coming to the help of oftentimes young parents in distress who suddenly discover the disease that their child is afflicted by. The association is ready to help them deal with the situation caused by the diagnosis.
This also involves material aid:
- To financially aid those in need
- To help deal with immediate expenses
- To particularly provide aid for equipment for those who will afterwards become visually impaired
Aid for research
With the help of a scientific board, the association actively participates in endeavors involving research and fighting the disease by financing all or part of projects and by participating in providing equipment oriented to research on retinoblastoma.
The association participates in providing information for health professionals on the characteristics of retinoblastoma by organizing conferences-debates, information circulated on the Internet and by participating in symposium.
The association is made up essentially of members including parents and friends of children afflicted by retinoblastoma. The association tries to promote encounters among members wanting some comfort and information from other parents who have shared the similar experiences.
Testimonies from members
Retinoblastoma, like many diseases, reminds us that we all have imperfections of different origins which can be a handicap. There can be imperfections we are unaware of and which are thus difficult to fight against. There are also imperfections we are aware of which we try to hide, for example character defects and then there are defects everyone can notice and that are recognized by society and are oftentimes viewed a handicap, which is exactly the case of « visual impairment ».
Many visually impaired individuals live virtually « normal » lives.
Access to higher education and numerous work sectors has been greatly facilitated by computers. Memorandum or books can be read after being scanned. The words in the text can be enlarged, read with a vocal system or transcribed in braille on a barille dsplay on which the letters pop up as points. Using a special printer, braille can be printed out on paper. By knowing the computer keyboard by heart, like many sighted individuals and by using combinations of keys to replace the mouse, visually impaired individuals find solutions using computers nowadays.
In France some financial aid, is available for those seeking to purchase this significantly costly material.
Seen from a larger perspective, technology, the development of other senses, but also personal experience and « tricks of the trade » acquired to compensate some difficulties, can improve daily living conditions for the visually impaired individual.
These individuals have lives which are similar to other individuals’ lives. Some have families, others live as man and wife with individuals which face the same or different difficulties.
The difficulties are to be ignored, but they probably favour the development of other qualities to deal with the situation (auditory attention paid to the environment which can lead to a capacity to listen to others). These are perhaps the qualities which attract attention and enable a very rich family and social life, and contact with associations and friends given the fact that these relations are not based on mere appearance. Who is to say if the impairments of each and everyone of us are not, in this way, at the roots of some exceptional forces? (This paragraph was drafted by a visually impaired individual.)
In the research field, the association was able to provide funding for a project carried out by Mr Maillard, a chemist and researcher at the CNRS, involving the evaluation of the therapeutic potential of synthesized products applied to the treatment of retinoblastoma using dynamic phototherapy on the animal model grafted with retinoblastoma cells.
In terms of equipment, Rétinostop contributed to the purchase of laboratory material used to study the genetic alteration of the RB gene for the benefit of the Doctor Stoppa-Lyonnet’s Genetics department at the Curie Institute in Paris.
The association likewise participated in the purchase of digital camera for the capture and analysis of images for chromosomic imagery for the department of Doctor Couturier, of the Curie Institute’s Insem cytogenetics Unit 509 (molecular pathology of cancer).
It is to be reminded that a RetCam camera was purchased jointly with ARC and the Curie Institute for the benefit of the Doctor Desjardin’s Ophthalmology Department. This camera enables wide angle ocular fundus photos to be taken with images stored and filed on computer which makes it possible to compare ocular fundus images from one examination to the other. The Ophthalmology Department at the Curie Institute is a reference in research and treatment of retinoblastoma and is one of the centers in the world with such a camera.
With regards to aid to parents, the association along with the APAESIC and the Curie Institute carried out a study by Ms Delage, psychologist at the Curie Institute, on the experience of parents of children with retinoblastoma. This study helped the medical teams to better understand the needs and expectations of parents with regards to the introduction and hospitality, information, organisation of exams and to provide the means to better integrate the parents into the procedure for accompanying children during and after hospitalizations.