Dear friends and family and anyone out there reading this today we are starting this campaign to help baby Cooper and us get through these difficult times.
On March 15th 2016 our baby boy Cooper Jaxon Cohen was diagnosed with a very rare genetic disorder called FOXG1 syndrome. This is a rare disorder which currently affects less than 248 people worldwide. The symptoms of this rare disorder are delayed motor skills and severe brain and developmental issues as well as seizures and involuntary movements of his head and hands along with long crying spells which could last hours and a slew of other problems. There is a 50% chance he may never walk or talk we pray every day that he will overcome those odds with lots of physio and occupational and speech therapy. As this maybe a shock to all of you this has been a major shock to us as we all want our kids to be happy and healthy but unfortunately this is not always the case. Jen, Charlie, Cooper and I have a very long road ahead of us we don’t know what the future holds but for now we are doing everything we can. We are currently reassessing our lives and making the adjustments to our life style needed to take care of Cooper and provide a somewhat normal life for our older child Charlie. Thank god for Charlie he is an amazing little boy and big brother to Cooper only 3 years old and he gets it and he is our little big helper. Earlier this year we went to Chicago to learn more about Cooper's condition and how to cope with it at the annual FOXG1 conference where all the top doctors and researchers are made available to the parents of children suffering from FOXG1. We had been really looking forward to this because what you read online is very scary and because of the small amount of people affected by this the Doctors here don't have much to go on we have to look everywhere we can. Cooper is our beautiful angel we are madly in love with him he has an infectious smile that can captivate any room he is in and us as parents will do whatever it takes to give him a happy life!
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