Chromosome 5

This documentary is about the effects the diagnosis of a disease like “Cri du chat” can have on a family. It is based on the “Little Black Book”, a diary, where the mother has been documenting the journey.

Andrea was born premature and, soon after, her parents suspected that something was wrong; she did not seem to gain weight and never cried, which is extremely unusual for a newborn. When Andrea was 1 years old, a geneticist confirmed their fears and officially identified Andrea’s disorder. At first, they were relieved to have something definitive and did not even seem so bad, but when the reality sank in, they felt fear and pain.

They feared the future: what kind of life would Andrea have? What about them? Would she be able to be independent? How would people act towards her?

They also felt pain because the reality was not what they expected. In a way, they had lost a child, they expectation of a healthy daughter.

Andrea’s father assimilated the news faster, but the mother had a hard time accepting that her daughter had “Cri du chat” and there was nothing she could do to change it. A minuscule amount of genetic material lost had made a huge impact on Andrea’s development.

Two years after Andrea, Billie was born. The two sisters have a special way of communicating, they do not need words. Billie notices how little Andrea talks but, since she is only 3 years old, she does not make any out of it. She loves her sister and encourages her to play and talk.

Andrea has “shared schooling”, which means that she spends 3 days on a special school and the other 2 days on a regular school. This is important for her development because in the special one she has individualized attention to help her progress and on the regular school she has to deal with plenty of kids and learns to interact with them, she is also pressured to reach their level.

In conclusion, this documentary is a story of the loss of a child and the encounter of other, just as valuable as the expected one. If Andrea did not have “Cri du chat”, she would be a different girl and that is unimaginable for her parents. They have learned to accept her as she is and have the strength to face unsympathetic people. Now, their wish is that she started to talk, which would be a huge step to improve her quality of life.