We got the diagnosis in March 2015. This was a mixed blessing as the diagnosis was very profoundly saddening , while at the same time also a big relief.
Saddening Imagine what would go through your heart if you found out your son will never be able to walk on his own? Or never be able to talk? We are desperately trying to fight to change this. The science and developments in genomics and research efforts favour us. We believe we will be able to find a cure very soon.
Relief However the diagnosis was a big relief as we now knew the underlying cause. We knew the enemy that we were up against. Getting the diagnosis was also able to give us many answers and get us connected with other parents.
Earlier this year, after coming across the FoxG1.com website and the IFF Facebook parents group, we connected with Jane another mother of a FoxG1 boy from Nowra NSW Australia who 11 years old. He is in mainstream school and in his age appropriate classes. We shared our story with her and the conversation was the biggest relief for us having for the first time, being able to connect with someone who truly understood and had exactly lived through what we were going through. The conversation was almost like reviewing her life to how she felt when her son was two. The conversation was almost like reviewing her life to how she felt when her son was two.
Being a single gene disorder, we are very hopeful that a cure will be found shortly. We would welcome you to join our journey to find a cure for Kush. We feel we are truly lucky to be able to get the diagnosis so quickly and to be able to connect to other families and understanding our predicament more wholly.
This (Rett Mouse reversal) is a link to what research has come up with for a mouse with Rett Syndrome which is very similar to FoxG1. We invite everyone to please join us in our journey to overcome FoxG1 and help other children like Kush, please visit FoxG1.com or contact Kush’s dad Vivek(me) to help in any way you can +61 433 806 830.
What keeps us going is the determination to help others like Kush and work towards finding a cure for FoxG1. What IFF Kush can walk and talk and toboggan and surf and run.
Well that being said – For the past 6 months of his life Kush has been the best we have seen him. He is a very happy little boy. He eats orally, he is spoon fed pureed foods and is maintaining age appropriate weight. He has recently started rolling from side to side and can hold his head up most of the time. He also loves to take turns and babbles. He doesn’t sit, walk or talk just yet. He laughs and smiles a lot he has a very happy disposition. His laugh is contagious and is the sweetest sound in the world.