Noe's fight for his sight
Donation protected
https://youtu.be/Pb5AVi9_Y_o At the end of 2011 Noe began to have some changes to his vision . He describe some kind of a blur that started out small and throughout the day he would rub his eyes thinking he could rub it out.He had a routine eye exam considered normal no glasses were prescribe only sunglasses for a better eye protection. As time progressed so did this condition. Mid 2012 the condition worsened the blur got worse in the right eye. Noe had a hard time driving and found himself unable to drive where I would have to wake up at 3 AM drive 25 miles away to and from home with our children to take Noe to work then drive home to sleep until it was time to go to work and school. It was then recommended by his primary doctor see another eye doctor who then thought Noe was having some kind of metal poisoning and recommended that we throw away all our pots and pans that were scratched with the possibility that he is been poisoned by a metal. Needless to say we threw away all our cookware except three pans making it hard to cook for a family with different tastes and come to think about it we still have have those 3 pans and made it work lol. Then it was recommended he see a nuero-othomalogist at UCD. After One all day doctors visit with Dr khadari he determined that it was possible Noe was affected by a hereditary condition. A blood sample was sent to a specialized laboratory in the Midwest. After almost 2 weeks it was confirmed Noe has Lebers hereditary optic Neuropathy.
(LHON) or Leber optic atrophy is a mitochondrially inherited (mother to all offspring) degeneration of retinal ganglion cells (RGCs) and their axons that leads to an acute or subacute loss of central vision; this affects predominantly young adult males. However, LHON is only transmitted through the mother as it is primarily due to mutations in the mitochondrial (not nuclear) genome and only the egg contributes mitochondria to the embryo. LHON is usually due to one of three pathogenic mitochondrial DNA (mtDNA) point mutations. These mutations are at nucleotide positions 11778 G to A, 3460 G to A and 14484 T to C, respectively in the ND4, ND1 and ND6 subunit genes of complex I of the oxidative phosphorylation chain in mitochondria. Men cannot pass on the disease to their offspring.[1]
Noe had to step down from his job that he loved. He also enjoyed playing softball with a group of local parents who once won a championship .Then he was no longer able to drive, read even some of the biggest print possible this devastating to him on a level like no other.Our children tried to understand why their dad could no longer read ,take them or drive them anywhere. Often described as being on lock down by one of our children. They said this only because I don't drive long distance and Nor did all the time now it's my turn. In October 2013 Halloween day we welcomed our third child. Soon when it was time for me to go back to work we faced the unknown of who would take care of our child while I worked. After some low vision training he stayed home with our infant. On my lunch hour or breaks we would face time each other so I could help him read a label or find out how much milk he was putting in a bottle for our daughter. He has done an amazing job she is now almost 3 and she knows her numbers colors etc all thanks to her dad. It comes with a saying that like our marriage vowels in sickness and in health we are united since day one.Our family is strong and pray for a cure.
Noe has prequalified for a clinical trial in Pasadena California with Dr Sudun at the Doheny eye institute July 26. Only 21 candidates will be able to participate in the clinical trial. He is hoping to qualify for this and is looking forward to try. Unfortunately we found out today that in order to meet with the specialist conducting the clinical trial we would have to pay out-of-pocket nearly $2000.00+ it's a consultation ,testing more extensive than a routine eye exam. This office does not take a down payment and or a payment plan. We are only one income Plus his Social Security that helps but does not go very far. Due to the short amount of time and number of anxious applicants we cannot put off this visit and risk losing a spot . So friends and family have asked how they can help.Anything helps to get Noe to his doctors visit for a chance.If he doesn't qualify we will actually learn more of the do's and don'ts of this hereditary condition and the medication we have to order out of the country since the FDA has not approved it for our country. Again if you would like to help him here is a way to help
Thank you
Laura,Rozie,Michael Kylie
(LHON) or Leber optic atrophy is a mitochondrially inherited (mother to all offspring) degeneration of retinal ganglion cells (RGCs) and their axons that leads to an acute or subacute loss of central vision; this affects predominantly young adult males. However, LHON is only transmitted through the mother as it is primarily due to mutations in the mitochondrial (not nuclear) genome and only the egg contributes mitochondria to the embryo. LHON is usually due to one of three pathogenic mitochondrial DNA (mtDNA) point mutations. These mutations are at nucleotide positions 11778 G to A, 3460 G to A and 14484 T to C, respectively in the ND4, ND1 and ND6 subunit genes of complex I of the oxidative phosphorylation chain in mitochondria. Men cannot pass on the disease to their offspring.[1]
Noe had to step down from his job that he loved. He also enjoyed playing softball with a group of local parents who once won a championship .Then he was no longer able to drive, read even some of the biggest print possible this devastating to him on a level like no other.Our children tried to understand why their dad could no longer read ,take them or drive them anywhere. Often described as being on lock down by one of our children. They said this only because I don't drive long distance and Nor did all the time now it's my turn. In October 2013 Halloween day we welcomed our third child. Soon when it was time for me to go back to work we faced the unknown of who would take care of our child while I worked. After some low vision training he stayed home with our infant. On my lunch hour or breaks we would face time each other so I could help him read a label or find out how much milk he was putting in a bottle for our daughter. He has done an amazing job she is now almost 3 and she knows her numbers colors etc all thanks to her dad. It comes with a saying that like our marriage vowels in sickness and in health we are united since day one.Our family is strong and pray for a cure.
Noe has prequalified for a clinical trial in Pasadena California with Dr Sudun at the Doheny eye institute July 26. Only 21 candidates will be able to participate in the clinical trial. He is hoping to qualify for this and is looking forward to try. Unfortunately we found out today that in order to meet with the specialist conducting the clinical trial we would have to pay out-of-pocket nearly $2000.00+ it's a consultation ,testing more extensive than a routine eye exam. This office does not take a down payment and or a payment plan. We are only one income Plus his Social Security that helps but does not go very far. Due to the short amount of time and number of anxious applicants we cannot put off this visit and risk losing a spot . So friends and family have asked how they can help.Anything helps to get Noe to his doctors visit for a chance.If he doesn't qualify we will actually learn more of the do's and don'ts of this hereditary condition and the medication we have to order out of the country since the FDA has not approved it for our country. Again if you would like to help him here is a way to help
Thank you
Laura,Rozie,Michael Kylie
Organizer
Laura Cano
Organizer
Esparto, CA
