Cri du chat or Cri-du-chat
When I was a kid, I was given more than all the care and love that a child can possibly have. My parents used to call me a ‘Princesses’ and especially to my mother, I was more like a most precious, extremely beautiful and a very rare Gem existing on the face of the earth. In view of all that priority, love and care, I used to ask myself that what is it to be a ‘MOTHER’, how it feels to let yourself giveaway all the precious things to you just for the sake of your child- as my mother gave up her music just to raise me with all her priority.
And then the most awaited moment in my life came when I was about to give birth to my first baby. It felt as if I were in heaven and all my dreams came true. Lying there, I gave birth to a baby boy and the journey to happiness began.
A few days later, I realized that I was ignoring a high pitched cat-like cry of my baby, believing it to be a normal cry of newborn that will ultimately change with the passage of some days. I then consulted a doctor for this who diagnosed my child and noticed a low birth weight along with weak muscle tone (hypotonia). Upon a thorough examination, I was being told that my child was suffering from Cri-du-chat syndrome.
Cri du chat or Cri-du-chat syndrome is also termed as chromosome 5p deletion syndrome, 5p- syndrome or Lejeune’s syndrome. It is a rare but a major genetic disorder due to the chromosome deletion of genetic material on the small arm (the p arm) of chromosome 5. It’s been named on the basis of a French term (cat-cry or call of the cat) referring to the characteristics of a cry of affected children like that of a cats cry. It was identified in 1963 and since then, this condition affects nearly about 1 in 50,000 live births all across the world and it more common in females by a ratio of 4:3.
Following are some pictures of the children suffering through this particular disease.
I were straightforwardly told by the doctors that ‘No specific treatment is available for this syndrome’. These words fell upon me as if they were the nuclear bombs that fell upon Nagasaki and Hiroshima. I were totally doomed in my disappointment and it felt as if my life was cursed. Whenever I looked at my child, all I could realize was my inability to cure the ‘Gem’ of my heart.
After a few weeks, a friend came by to give me some hope. That friend was like a ‘Guiding Angel’ who introduced gatherX to me. She recommended me to give it a try and I did so. I logged on to gatherX and created a Discussion named after the disease ‘Cri-du-chat’ and in that gathering I happen to talk to a mother who was footed in my shoes too. She too had a child suffering from the same disease. Talking to that mother proved to be like I pulled off an Everest of disappointment and hopelessness. She told me that children born with this genetic condition will most likely require ongoing support from a team made up of the parents, therapists, and medical and educational professionals to help the child achieve his or her maximum potential and with consistent educational intervention, as well as physical and language therapy, children with cri-du chat syndrome are capable of reaching their fullest potential and can lead full and meaningful lives.
At that day, on gatherX, she shared her hope to me and made me realize that both of us and even all the mothers out there in the world, who are suffering from the same pain can look at the brighter side of the life as they can live up their lives with a satisfaction that their children have a tendency to lead a full and meaningful lives provided consistent educational intervention.
I no longer consider myself to be cursed rather I’ve accepted my fate with satisfaction and can move on to make my child lead a full and happy life. I am whole heartedly thankful to this platform ‘gatherX’ that it brought a total stranger to my life as a light of hope and I recommend ‘gatherX’ to all the people out there, who have issues or who have remedies or hopes to join this platform and bring light to their as well as others lives too because this is the only social networking website ‘THAT’S WORTH IT’. So come, ‘Let’s talk to make a difference’.