(Note: This story was contributed, in first person, by M's mother. We extend our gratitude to her for all her time and effort!)

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M is a delightful 5 year old girl. And like any other 5 year old has her likes and dislikes. She loves music, dressing up, spending time with her family and even studies! But despite all this, M is not a ‘typical’ 5 year old. She has Rett syndrome, a severely debilitating genetic disorder that makes it hard for M’s brain to send messages to the rest of her body and as a result her body cannot perform even the most basic actions like talking, walking and meaningfully using her hands. M was not always ‘different’. The first 12 months of her life were fairly typical with us parents being overjoyed about the birth our beautiful baby girl and trying to give her the best possible life we knew how. But at her 1 year routine check-in with her pediatrician, it was discovered that M was behind on some of her developmental milestones and we were asked to start occupational therapy to see if that leads to any improvement. However, when things did not improve even when M turned 18 months old, further MRI and genetic testing were suggested after which we came to know about this horrible diagnosis.

The first few weeks after M’s diagnosis were without doubt the worst days of our lives. From questioning ‘why her’ to ‘could we have done anything different’ to the most difficult ‘now what’, we had only questions and no answers. On top of the questions, the grief was overbearing. I remember that two weeks after the diagnosis one day I had severe pain in my chest and for a few minutes I was sure that I was going to die. But that day I realized that this was no more an option for me. I could not let her fight this fight alone. So I gathered myself and started looking for answers. Almost as a boon I found an international patient community of Rett parents on Facebook where I heard from experienced parents that while this will in no way be easy but my girl can still live a full life and while it seemed hard to believe then, we can even be ‘happy’.

We discovered through the group that the standard of care for rett kids in terms of communication is what is called ‘Eye gaze technology’. It is essentially a computer that has an attached sensor to understand where the user is looking at the screen and with apps built for communication can assist rett kids talk by ‘saying’ the word the child looks at the screen. We immediately got in touch with the dealer in India (for this company called Tobii Dynavox) and had M’s trial device (and then final device) within three months of her diagnosis. And from there began the journey of teaching M to communicate through her device. The biggest and most crucial step in this journey is called ‘modeling’ which is to use the device to talk to her i.e. pointing to words on the device to communicate anything we want to say to her. Children learn language, any language, by observing adults around them use it and alternative communication is no different. With time, M started picking up a few words on the device. We would also always always assign meaning to what she said which is very important as the child definitely needs to feel heard.
 

By the time M was 3 and started going to school she could say a number of words on the device like ‘Hello’, Bye’, ‘Yes/No’, ‘Yummy/ yucky’ etc. We were also lucky to find an inclusive school where she got 1-1 education from her special educator (using her device) and now her vocabulary has expanded to more than just a few words. She has also learned the alphabet using phonetics and can currently spell multiple 3 letter words. We also make sure that all or most communication with her happens through her device so that she can keep learning to communicate. I want her to be able to read and write one day so that her world can expand beyond her immediate surroundings that she is sometimes hostage to because of her condition. She anyway loves being read to and we have always read multiple books to her from a very early age. There are many many many hardships along the way as can be expected with a severe condition like this but my goal is for her to be able to share her feelings with me so that she never has to go through any feelings of despair alone and always knows that her mom and dad are with her through anything and everything.