[tupilaq]

From the very little experience I have of rare chromosomal disorders and attending a number of conferences dedicated to my sons specific condition, what i do see is people passionate to understand and improve things for their kids and for others primarily through research into conditions and from the dissemination of information. It is obvious that you are determined to do what it takes.

Please do try and make contact with Dr. Jannine Cody[1] who when faced with a not too dissimilar position to yours pretty much single handedly set about doing what she had to in order to understand and improve her daughters condition and in the process has created a worldwide network of families that meet at conferences and fund research.

Good luck, know that you do not stand alone. It might seem like you do, but you'll be surprised.

[1]: https://www.chromosome18.org/chromosome18-team/jannine-cody/

[halukakin]

Thank you so much! I will definitely learn more about her work.