Help My Children Fight Blindness
Donation protected
My name is Angela Kakos and I decided to put together a fundraiser for a very good client of mine. I have worked with this family for years and their situation not only touched my heart, but it compelled me to do something to help this beautiful family and their children. My client was very reluctant to ask for assistance but I finally convinced them that any help on their cause will not only benefit their babies, but other children who have the same problem worldwide. In order to protect their children, I have kept their information private.
Here is their story...
I would first like to start by explaining why we do not feel comfortable sharing our children’s names or posting a picture of our children along with their story...life is hard enough as it is. The last thing we want are people possibly treating them any different than “normal.” I could never put into words the pain and hurt we have dealt with as parents already and dealing with anymore is the last thing we can handle at this time. They are beautiful, healthy and resilient children that have a disorder and we pray we will overcome this as a family by the grace of our Lord. We thank you from the bottom of our hearts for listening and sharing this post and may god bless you all...
When our child was born, we were filled with so much joy. However, seven weeks after giving birth, the pediatrician urged us to take our newborn to a neurologist and pediatric opthomologist because he stated my child had nystagmus (involuntary rapid eye movement), something I had never heard of. We went to countless appointments and no one could explain how our precious baby had this. Besides the nystagmus, the retina looked healthy and our baby had passed all neurological testing. They stated there was no reason behind it since we both did not have it nor did anyone in our families or extended families have it and labeled it as “congenital nystagmus.”
After being reassured by doctors that this is not something that would ever happen again and it was merely a “fluke,” we decided to have another child. They went as far as to say I have a higher chance winning the mega millions than having another child with this issue. When our child was born, the happiness I felt is something I could never explain. I was looking forward to actually “enjoying” my newborn instead of going to countless appointments and living in anxiety and fear of the unknown future our first born will have with their vision. We felt that God gave us a miracle. Everyday that passed, I felt the weight slowly lifting off my chest because I knew that nystagmus typically appears within the first eight weeks of life. Seven and a half weeks later, I noticed my newborns eyes started to rapidly move and my heart broke in a million pieces. We haven’t been the same since that moment of finding out that our newest addition had nystagmus as well. I immediately contacted the pediatric opthomologist and she confirmed our fears. She urged us to see a retinal dystrophy specialist to perform genetic testing. She stated that she no longer believed our toddlers nystagmus was a fluke, that they may possibly have inherited an eye disease. We were furious because after seeing several specialists, we were never once told there could be an actual reason for nystagmus besides neurological, which we had already confirmed was not the case. Had we have known, we would have ran every test under the sun to ensure this would never happen to another child of ours. After waiting two weeks of what seemed like eternity, we finally got in with the specialist. After 9 weeks, genetic testing and other extensive exams, we discovered my husband and I had passed on a retinal dystrophy to our children. They stated it was a recessive gene and with each child we would have a 25% chance of passing it on to our child. Isn’t it crazy that out of 7 billion people in the world, the two people who fell in love happen to have a change in the exact same gene out of 30,000 genes?!
Cone dystrophy significantly reduces visual acuity, photophobia occurs, no color or limited color vision and it progresses as you grow. My children are so young and are already considered legally blind. Our hearts ache knowing they will continue to lose vision unless we find a cure.
I finally gathered my emotions enough to put them aside and go full force on making it our life’s mission to find a cure for our children. I emailed and contacted several universities, doctors and researchers around the world. Two weeks ago, our prayers were answered. This wonderful doctor called me on a Sunday evening just to simply tell me there is hope. He stated they are on the verge of uncovering the cure for the exact retinal dystrophy as our children and have received a grant from the NIH to research and find a cure for this particular gene. However, the amount given is not enough to carry it through to clinical trials. When we hung up, my husband and I decided that we will give it our all to raise funds for this cause. With enough funds, the doctors can continue their efforts and get it into a clinical trial before our children lose too many viable retinal cells. The sooner they administer this gene therapy, the better the results, preferably before the age of 9, which means we don’t have much time left. All funds go directly to their research, implementing their cure, getting it through clinical trials and finally getting it FDA approved.
We are praying for the day that our children will actually see the bowling pins when we bowl and not only hear them fall; not only hear their favorite characters sing “Sunny Days” but actually see Big Bird and Elmo sing it when we take them to Sesame Street Live; when they hear the airplane flying in the sky, they won’t say “mommy you need to make it bigger for me so I could see it too” and most importantly, recognize mommy and daddy’s face when we are further than two feet away. Anything you can do to bring us one step closer to developing this cure, would mean the world to us and to our children.
Please click on this link to hear the very promising research that has been completed for the cure we have prayed for.
https://www.jci.org/posts/586
If you would like to make a donation directly to them, you can click on the following link.
https://give.ucdavis.edu/Donate/YourGift/DPTSRSH
In the special instructions, please indicate that you would like for it to be used for Dr. Ala Moshiri’s achromatopsia research and it will go entirely to the research. Donations are not used for any type of salary for neither him or his research team.
Together, we could help make a difference in these children’s future by helping them SEE the beautiful world God has created! God bless you all!
Here is their story...
I would first like to start by explaining why we do not feel comfortable sharing our children’s names or posting a picture of our children along with their story...life is hard enough as it is. The last thing we want are people possibly treating them any different than “normal.” I could never put into words the pain and hurt we have dealt with as parents already and dealing with anymore is the last thing we can handle at this time. They are beautiful, healthy and resilient children that have a disorder and we pray we will overcome this as a family by the grace of our Lord. We thank you from the bottom of our hearts for listening and sharing this post and may god bless you all...
When our child was born, we were filled with so much joy. However, seven weeks after giving birth, the pediatrician urged us to take our newborn to a neurologist and pediatric opthomologist because he stated my child had nystagmus (involuntary rapid eye movement), something I had never heard of. We went to countless appointments and no one could explain how our precious baby had this. Besides the nystagmus, the retina looked healthy and our baby had passed all neurological testing. They stated there was no reason behind it since we both did not have it nor did anyone in our families or extended families have it and labeled it as “congenital nystagmus.”
After being reassured by doctors that this is not something that would ever happen again and it was merely a “fluke,” we decided to have another child. They went as far as to say I have a higher chance winning the mega millions than having another child with this issue. When our child was born, the happiness I felt is something I could never explain. I was looking forward to actually “enjoying” my newborn instead of going to countless appointments and living in anxiety and fear of the unknown future our first born will have with their vision. We felt that God gave us a miracle. Everyday that passed, I felt the weight slowly lifting off my chest because I knew that nystagmus typically appears within the first eight weeks of life. Seven and a half weeks later, I noticed my newborns eyes started to rapidly move and my heart broke in a million pieces. We haven’t been the same since that moment of finding out that our newest addition had nystagmus as well. I immediately contacted the pediatric opthomologist and she confirmed our fears. She urged us to see a retinal dystrophy specialist to perform genetic testing. She stated that she no longer believed our toddlers nystagmus was a fluke, that they may possibly have inherited an eye disease. We were furious because after seeing several specialists, we were never once told there could be an actual reason for nystagmus besides neurological, which we had already confirmed was not the case. Had we have known, we would have ran every test under the sun to ensure this would never happen to another child of ours. After waiting two weeks of what seemed like eternity, we finally got in with the specialist. After 9 weeks, genetic testing and other extensive exams, we discovered my husband and I had passed on a retinal dystrophy to our children. They stated it was a recessive gene and with each child we would have a 25% chance of passing it on to our child. Isn’t it crazy that out of 7 billion people in the world, the two people who fell in love happen to have a change in the exact same gene out of 30,000 genes?!
Cone dystrophy significantly reduces visual acuity, photophobia occurs, no color or limited color vision and it progresses as you grow. My children are so young and are already considered legally blind. Our hearts ache knowing they will continue to lose vision unless we find a cure.
I finally gathered my emotions enough to put them aside and go full force on making it our life’s mission to find a cure for our children. I emailed and contacted several universities, doctors and researchers around the world. Two weeks ago, our prayers were answered. This wonderful doctor called me on a Sunday evening just to simply tell me there is hope. He stated they are on the verge of uncovering the cure for the exact retinal dystrophy as our children and have received a grant from the NIH to research and find a cure for this particular gene. However, the amount given is not enough to carry it through to clinical trials. When we hung up, my husband and I decided that we will give it our all to raise funds for this cause. With enough funds, the doctors can continue their efforts and get it into a clinical trial before our children lose too many viable retinal cells. The sooner they administer this gene therapy, the better the results, preferably before the age of 9, which means we don’t have much time left. All funds go directly to their research, implementing their cure, getting it through clinical trials and finally getting it FDA approved.
We are praying for the day that our children will actually see the bowling pins when we bowl and not only hear them fall; not only hear their favorite characters sing “Sunny Days” but actually see Big Bird and Elmo sing it when we take them to Sesame Street Live; when they hear the airplane flying in the sky, they won’t say “mommy you need to make it bigger for me so I could see it too” and most importantly, recognize mommy and daddy’s face when we are further than two feet away. Anything you can do to bring us one step closer to developing this cure, would mean the world to us and to our children.
Please click on this link to hear the very promising research that has been completed for the cure we have prayed for.
https://www.jci.org/posts/586
If you would like to make a donation directly to them, you can click on the following link.
https://give.ucdavis.edu/Donate/YourGift/DPTSRSH
In the special instructions, please indicate that you would like for it to be used for Dr. Ala Moshiri’s achromatopsia research and it will go entirely to the research. Donations are not used for any type of salary for neither him or his research team.
Together, we could help make a difference in these children’s future by helping them SEE the beautiful world God has created! God bless you all!
Organizer
Angela Kakos
Organizer
Troy, MI
