I would like to introduce you to my beautiful son Joshua Cole.  He is the most amazing child.  He is truly my hero and my inspiration.  Josh is extremely smart, strong, and funny.  He has the greatest sense of humor.  Josh is almost 6 years old.  He was diagnosed with 1p36 deletion syndrome when he was three weeks old.  Josh has global developmental delay, hypotonia, and epilepsy.  He does not walk, talk, or feed himself.  However, he is starting to take steps, he babbles all of the time, and he just recently graduated to a big boy cup.

 

When Josh was diagnosed with 1p, we were told that only 10 to 20 children had been diagnosed in the world.  Since then the number of children has risen to 1 in 5,000  or 1 in 10,000 children diagnosed.  Depends where you read your statistic.  Since this disability is relatively new there is very little information on long term prognosis, and very few people willing to help.  We have moved to three different states just to find people that believe in him.  We now live in Florida,  and have a group of therapists that truly care for him.  The problem now is we are being told that he is strong enough and smart enough to do more( like walk, communicate, and feed himself), but his window is closing. 

 

I am scared.  I want everything for my little boy.  I am so sad that it took five years to find people who want to help him.   I want to see my baby walk to me.  I want to be able to sit down for dinner and eat with him.  I want to hear him say "Mama, I love you"  I don\'t want it to be to late.  Josh has been through so much in his lifetime.  He has stopped breathing from seizures.  He has had so much rejection from people who said he can\'t succeed. He has cried uncontrollably when kids won\'t play with him.  I just want him to have a chance. Thank you for you time.

 

Sincerely,

Michelle ( Mom to a true champion)