Help Kino Regain His Eyesight
Donation protected
It was Friday, the 17th of February. Like any other check up; I excitedly got ready for my 26 week check up with my doctor. I always loved these check ups because sometimes the doctor would use her mini ultrasound machine to show me how my little man was doing in there.
We did the usual check up but this time things were different. My blood pressure was slightly elevated. Without giving away anything she told me to go home, pack a bag and book myself into hospital for observation.
Fast forward to Sunday the doctor was still not happy with my blood pressure and my urine samples so she made the decision to remove him (Kino), and that was the beginning of Kino’s roller coaster life!!! He came out at 920grams.
I remember waking up from the aesthetic and asking to breastfeed my baby; I did not know what it meant to have a preemie baby. The next couple of days were filled with so many emotions of guilt, joy, worry, dread and most of all fear. I remember seeing him for the first time inside that glass incubator. My heart was filled. He was mine and I was his for life.
His time in the NICU Neonatal intensive care unit was not an easy one. While admitted in incubator for 7months he developed tracheomalacia.
He was only 800grams(his weight dropped) when he got his tracheostomy tube(Breathing tube) put in. That was the day we almost lost him but God had other plans. August of 2012 his doctor was concerned that he was not putting on enough weight. He was refusing food. So he got another tube put in. I had to feed him through his gastrostomy tube until he was a year and some months and he decided to remove it himself and start eating on his own.
Finally at the age of 3 and a half he got his tracheostomy tube removed. We were ready to start an amazing and normal life with our boy. We were excited to get rid of that horrible suction machine that we had to use to remove the build up that would accumulate inside his trachy tube. We were happy to finally end the hospital visits and weeks of overnight stays, to end the theatre visits, having to hold him down so that the nurses could put an IV line into his arms or hold him down so that they could put him to sleep for his routine theatre checks.
It was until last year June 15, 2017 when our darling boy (Kino) went blind. We did a series of medical examination such as Lumber puncture/MRI and more.
None of the Namibian doctors could give us answers as to what was going on with our son. It was so painful not knowing. We flew our son to Cape Town, South Africa to a paediatric Neurosurgeon (Dr Akerman, at the Children’s Red cross) and she later diagnosed him with Neuromyelitis Optica, also known as Devics Disease. A rare autoimmune disease that just comes out of nowhere. We were back to hospital dashes, hospital stays, tons of medication. He was told he developed Optic Atrophy due to the disease. He had no light perception at all; making it the highest form of blindness.
While looking up his condition Kino’s grandparents came across an amazing centre in Berlin called The Fedorov Restore Vision Clinic https://www.restorevisionclinic.com/. They help people who have lost their vision due to some sort of optic nerve damage through Electrotherapy stimulations. We immediately made an appointment and saved up to take him there. At first they did not want to take him as they do not take patients with no light perception but because he is still a child, he stood a better chance than an adult with no light perception. We saved up to pay for the treatment, air tickets, accommodation and made our way to Germany.
10 days of the Electrotherapy stimulation have Kino his light perception. Weeks after the treatment he could react to strong light. We saved up again to go in September 2018 (the more you go the better the improvement) which was our 2nd consultation. He can now respond to low level light. We are hoping that in the coming months he will be able to make out shadows.
One thing that has always kept us going and kept us positive is what a joyful boy Kino is. Nothing can dampen his spirits. He has adapted to his vision loss so well and we couldn’t be prouder of him. He has always been a happy baby from birth.
We come to you to please help us fund for his next Electrotherapy session for this year June 2019. We would love to raise US$60 000 which would cover the air tickets, accommodation, treatment, medical scans and tests.
for more info and progress on in the life of kino you can follow him on instagram @kinokali2012 where we are documenting his lifetime story and achievements.
Thank you in advance, and God Bless you!
We did the usual check up but this time things were different. My blood pressure was slightly elevated. Without giving away anything she told me to go home, pack a bag and book myself into hospital for observation.
Fast forward to Sunday the doctor was still not happy with my blood pressure and my urine samples so she made the decision to remove him (Kino), and that was the beginning of Kino’s roller coaster life!!! He came out at 920grams.
I remember waking up from the aesthetic and asking to breastfeed my baby; I did not know what it meant to have a preemie baby. The next couple of days were filled with so many emotions of guilt, joy, worry, dread and most of all fear. I remember seeing him for the first time inside that glass incubator. My heart was filled. He was mine and I was his for life.
His time in the NICU Neonatal intensive care unit was not an easy one. While admitted in incubator for 7months he developed tracheomalacia.
He was only 800grams(his weight dropped) when he got his tracheostomy tube(Breathing tube) put in. That was the day we almost lost him but God had other plans. August of 2012 his doctor was concerned that he was not putting on enough weight. He was refusing food. So he got another tube put in. I had to feed him through his gastrostomy tube until he was a year and some months and he decided to remove it himself and start eating on his own.
Finally at the age of 3 and a half he got his tracheostomy tube removed. We were ready to start an amazing and normal life with our boy. We were excited to get rid of that horrible suction machine that we had to use to remove the build up that would accumulate inside his trachy tube. We were happy to finally end the hospital visits and weeks of overnight stays, to end the theatre visits, having to hold him down so that the nurses could put an IV line into his arms or hold him down so that they could put him to sleep for his routine theatre checks.
It was until last year June 15, 2017 when our darling boy (Kino) went blind. We did a series of medical examination such as Lumber puncture/MRI and more.
None of the Namibian doctors could give us answers as to what was going on with our son. It was so painful not knowing. We flew our son to Cape Town, South Africa to a paediatric Neurosurgeon (Dr Akerman, at the Children’s Red cross) and she later diagnosed him with Neuromyelitis Optica, also known as Devics Disease. A rare autoimmune disease that just comes out of nowhere. We were back to hospital dashes, hospital stays, tons of medication. He was told he developed Optic Atrophy due to the disease. He had no light perception at all; making it the highest form of blindness.
While looking up his condition Kino’s grandparents came across an amazing centre in Berlin called The Fedorov Restore Vision Clinic https://www.restorevisionclinic.com/. They help people who have lost their vision due to some sort of optic nerve damage through Electrotherapy stimulations. We immediately made an appointment and saved up to take him there. At first they did not want to take him as they do not take patients with no light perception but because he is still a child, he stood a better chance than an adult with no light perception. We saved up to pay for the treatment, air tickets, accommodation and made our way to Germany.
10 days of the Electrotherapy stimulation have Kino his light perception. Weeks after the treatment he could react to strong light. We saved up again to go in September 2018 (the more you go the better the improvement) which was our 2nd consultation. He can now respond to low level light. We are hoping that in the coming months he will be able to make out shadows.
One thing that has always kept us going and kept us positive is what a joyful boy Kino is. Nothing can dampen his spirits. He has adapted to his vision loss so well and we couldn’t be prouder of him. He has always been a happy baby from birth.
We come to you to please help us fund for his next Electrotherapy session for this year June 2019. We would love to raise US$60 000 which would cover the air tickets, accommodation, treatment, medical scans and tests.
for more info and progress on in the life of kino you can follow him on instagram @kinokali2012 where we are documenting his lifetime story and achievements.
Thank you in advance, and God Bless you!
Organizer
Kahengere Tjiveta
Organizer
Travancore VIC
