Answers for Aaron

We initially started this fundraiser in December in order to take Aaron to Alabama for the most advanced genetic testing available.  During the process of preparing to secure our appointment, Aaron's local genetics doctor re-ran his Whole Exome Sequencing.  Less than two weeks after the blood draw we received a phone call stating that they had finally found his syndrome.  We literally waited more than four years for that call.

Aaron has been diagnosed with Nicolaides-Baraitser Syndrome (NCBRS).  There are less than 100 cased worldwide.  And everyone we talk to has never heard of this condition, including his genetics doctor.  Based on our research and Aaron's development thus far, it is likely that he will never function above that of a toddler.  I know to most people this sounds like terrible news, but for us it was great news.  I personally, have spent the last few years carrying around the fear that my son had something that would take his life at a very young age.  We know that NCBRS is not a fatal condition!!!  Knowing that my son is not going to be taken from us due to this condition is a huge weight lifted off of our shoulders.

We have decided to continue this campaign and to host a benefit in Aaron's honor to assist us with the care he will need for the remainder of his life.  He will never live independently.  Some immediate needs include a bed that keeps him safe at night, he is unable to sleep in a normal bed.  In addition, Aaron's service dog will be born this fall.  This puppy will bring on expenses that we have not had in the past.  We have also been able to connect with other families affected by this condition and we found out that there are annual meetings, in Toronto and the UK.  We need to be able to take Aaron to these meetings in Toronto so that he can be around kids just like him and so that we can be encouraged by parents that have been living through this condition longer than us.  One other immediate want for Aaron is a sensory room for him to use during therapy and other times.  This would give him a safe place to play and learn!

Obviously, we wish that we were able to provide all of these things for our son, but we can't.  They say that it takes a village, but when the child has special needs, it might take a few.  If everyone reading this donated $1 we would be able to do so much for Aaron.  Please consider helping us help our son.  You can also follow Aaron's Answers on Facebook. 

Thank you for reading!!!