- N
- J
- A
Our son Anthony, a beautiful two-year old baby boy, who is "fragile, but not broken", needs your help on the road to becoming verbal. He was born with a genetic disorder called "Fragile X Syndrome". This being Fragile X Awareness month, and today being Fragile X Awareness Day, we wanted to shed some light on this developmental disorder affecting him and ask for a little bit of help at the same time. Something that is not easy for us to do, but we have made the decision to have Diana stay home with him to be sure that Anthony is rising to his full potential developmentally. It is for this reason that we have come to a point where we we are hindered financially to take that extra step towards his development.
Fragile X Syndrome affects 1 in every 4,000 males. Only 8% of which will go on to lead a "normal" life. It is caused by a mutation on the FMR1 gene, causing it to have a fragile piece hanging at the bottom, stopping a certain protein from being produced in the brain. This lack of protein then causing developmental delays. Depending on the repeats on the gene, the delays can be anywhere from mild to severe. Anthony's gene has been "fully affected" and his repeats put him in the moderately delayed category.
Those of you who have had the honor of having Anthony be a part of your lives know that Phil and I are truly blessed that he chose us to be his Mommy and Daddy. This syndrome has affected him in more ways than we have the strength to wrap our heads around sometimes. But as we stated in the beginning, he is merely fragile. He is not broken. He has struggled to meet each of his milestones and we have been with him every step of the way. He has worked tirelessly, giving more effort and enduring more than a little baby boy is ever supposed to, and we could not be more proud of him! He breaks through the expectations that society has placed on him each and every day!
Phil and I could not imagine our lives any other way and we know that Anthony, surrounded by the love and support of all his loved ones, is going to continue to break through those expectations! His smile light up his whole face and so much happiness to the room and his laugh brings such joy. Life has big plans for him!
Phil and I know, in our hearts, that part of this plan is to be able to communicate verbally, which he is currently struggling with. We have found an amazing program called GemIIni, which helps non-verbal children learn how to communicate. This is where we need whatever financial help you might be able to give. The program is $98 a month for the most basic. We, at the moment, have too many other bills to pay and are unable to swing this!
We are asking for any little bit you can provide to get us one step closer to our verbal communication goal for Anthony. He is our world, and we want him to be able to share his world with his words. With your help he can be that much closer to being a little less "fragile" and a little more "handle with care".
We are truly humbled to reach out to all of you and to say "Thank You" is not nearly enough. Anthony is one of the luckiest little boys in the world and one day, when he is able to express his thoughts via verbal communication, he will thank you himself and you will know that your love and generosity has made that possible for him.
With Love and Gratitude,
Anthony (and his Mommy Diana and Daddy Phillip)
Fragile X Syndrome affects 1 in every 4,000 males. Only 8% of which will go on to lead a "normal" life. It is caused by a mutation on the FMR1 gene, causing it to have a fragile piece hanging at the bottom, stopping a certain protein from being produced in the brain. This lack of protein then causing developmental delays. Depending on the repeats on the gene, the delays can be anywhere from mild to severe. Anthony's gene has been "fully affected" and his repeats put him in the moderately delayed category.
Those of you who have had the honor of having Anthony be a part of your lives know that Phil and I are truly blessed that he chose us to be his Mommy and Daddy. This syndrome has affected him in more ways than we have the strength to wrap our heads around sometimes. But as we stated in the beginning, he is merely fragile. He is not broken. He has struggled to meet each of his milestones and we have been with him every step of the way. He has worked tirelessly, giving more effort and enduring more than a little baby boy is ever supposed to, and we could not be more proud of him! He breaks through the expectations that society has placed on him each and every day!
Phil and I could not imagine our lives any other way and we know that Anthony, surrounded by the love and support of all his loved ones, is going to continue to break through those expectations! His smile light up his whole face and so much happiness to the room and his laugh brings such joy. Life has big plans for him!
Phil and I know, in our hearts, that part of this plan is to be able to communicate verbally, which he is currently struggling with. We have found an amazing program called GemIIni, which helps non-verbal children learn how to communicate. This is where we need whatever financial help you might be able to give. The program is $98 a month for the most basic. We, at the moment, have too many other bills to pay and are unable to swing this!
We are asking for any little bit you can provide to get us one step closer to our verbal communication goal for Anthony. He is our world, and we want him to be able to share his world with his words. With your help he can be that much closer to being a little less "fragile" and a little more "handle with care".
We are truly humbled to reach out to all of you and to say "Thank You" is not nearly enough. Anthony is one of the luckiest little boys in the world and one day, when he is able to express his thoughts via verbal communication, he will thank you himself and you will know that your love and generosity has made that possible for him.
With Love and Gratitude,
Anthony (and his Mommy Diana and Daddy Phillip)