Our Journey with rehabilitation:

So now we know Tala’s condition.. it sunk in.. now we need to swallow all the pain and all the sense of how unfair the situation is and get up and take action..

Except that “where should we start?” this area is very shady and dark and basically a taboo..

We started by calling Dr Nasser Gamal, Tala’s paediatrician who advised us to contact a genetics doctor..

At this point I didn’t know what to ask, Tala’s case has no name so I didn’t even know what to look for on the internet. I tried reading about chromosome 9 but I all I can find is a condition called trisomy, which means that chromosome 9 has three arms instead of 2 which was not Tala’s case. Tala had two arms but one of them had genes deleted completely and genes duplicated..

Let me explain this as simple as possible.. each person has 46 chromosomes in every single cell of your body. Each chromosome is made of two arms.. every arm carries very specific genes.. Genes are like a computer code, they have to be very very accurate and specific for each person. These genes control every single detail about you.. from how you chew your food to the color of your eyes, to how you control your movements.. every single thing that makes you who you are.. and just like any computer code, one single change in this code will mess things up.. so having extra genes or gene deletion affects your whole system.. depending on which genes are duplicated or deleted, certain areas in development are affected..

With Tala she had both, genes duplicated and genes deleted..

We went to Dr Ahmed Darwish (genetics doctor) who advised us to take one step  at a time a don’t jump to conclusions and never ever compare Tala to other kids.. compare her progress to where she was and where she is now..

This sounds easy but it’s not.. It took a lot of practice to stop comparing her to others.. this was four years ago and I’m practicing..

Then he told us that different genetic disorders have similar symptoms but to different extents so he advised we read about other cases and observe Tala very closely..

We started our rehabilitation centers hunt..

Searched the internet, asked doctors where to go and there were very limited options..

Now here is my advice to you from my experience with all the therapies we’ve been through..

1)   Keep a journal about your child and write in it every single detail about your child.. everything you observe no matter how trivial it is..

2)   Keep track of the dates, when did you start therapy, when did you run labs and staple the results..

3)   Download from the internet the milestone developments checklist and follow your child’s development

4)   Attend therapies and ask doctors how you can help your child at home.. you can even videotape yourself at home working with your child and show it to your therapists and see if you’re working correctly or not..

5)   Read a lot about your child’s case, find blogs of mothers with similar cases and see what they did.. learning from mothers is the best way to learn..

6)   Try to buy books about games and activities that you can do at home..

7)   Take your child out and play together.. arrange play dates with your friends children.. people who know your child’s case will learn with you how to deal with your child..

8)   Take short breaks from all the therapies and be a mother.. just a loving, caring mother who loves her child the way she is.. feeling loved and accepted by you is the most important thing that will push your child forward.

9)   Take pictures and videos with dates of your child doing new things so you can go back to these videos and see how he’s become different..

10)                 Ask for help when you need it.