Bring kobi out of the dark

So this is Kobi-jais story. Kobi was born on the 24/03/22. It’s been such a crazy experience from day dot. Kobi didn’t have the best start to life as he was placed in NICU for the first 6 weeks. Within that 6 weeks Kobi went through test after test and even a little operation. Things were picked up and gathered along his stay. We found out Kobi had a heart condition which resulted in him needing open heart surgery, he’s also got abnormal scaring on both eyes which suggests Kobi is blind in both his eyes and is only reacting to lights and a little bit of shadow. As you can imagine this was a massive shock to us as first time parents and to the whole family our world came crashing down so quickly when it was meant to be the best time of our lives. Many tears were shed and emotions were everywhere, nobody could ever prepare you for the news we were told. We were absolutely devastated for our son an innocent little boy needing to go through so much right at the beginning of his life.

After nearly a year of meetings, appointments, tests and examinations in multiple different hospitals we still didn’t have any answers regarding his eye condition or any further update on his open heart surgery. We decided to take matters into our own hands and write a formal complaint to the NHS and we spoke and got in contact with the local MP. From doctors and nurses telling us your son won’t make his childhood years if he doesn’t have his heart surgery by the age of 1 and we were nearly at his first birthday our heads and hearts were in overdrive. We pushed and pushed until a date was finally confirmed. After 3 cancellations whilst up at Bristol children’s hospital we refused to leave and Kobi finally went down to have his open heart surgery on Friday the 24th of February just one month exactly to his 1st birthday.

We’ve recently been up to Moorfield private eye clinic for children to seek another opinion and to gather further information we can regarding his eye condition. We are still awaiting to hear back. We as a family want to gather as much information and as many opinions and options from multiple places and people as we can to get Kobi the best possible help for his eyes and his future in hope that he will have some sight.

Our aim as a family is to try and bring more awareness of Kobi-Jais’s condition and seeking any additional information or advice possible to help and support Kobi with his future. As newly parents of a son with a blind disability we don’t feel as if there’s much support or help out there to understand more of the situation and how we learn and adapt with it. Classes and schooling is a massive concern of ours as well. Hoping this will help bring more parents forward and we can all help and support each other through this new journey in life none of us expected we’d be going through. We are currently stuck at a wall at the moment with where we are with Kobi and where we are going, we are hoping to find somewhere and someone that could possibly help Kobi-jai with his eyesight or even just his personal appearance ready for him to take on the big world himself.

We visited London Eye Clinic to see Surgeon Samer Hamada. He was a lovely man and we felt at ease with him. He performed tests on Kobi-Jai along with an ultra sound.

After examining Kobi he said he was hopeful this was great news concidering the negativity we received previously.

We understand it’s not final and anything can happen but some hope is better than nothing and quite frankly all we have .

Basically he said, the finding from today is he hopeful, but it all depends now on the results of Kobi’s brain/signal test which we have requested from GOSH, once he has these we will have a zoom meeting and he can tell us the chances, risks and a plan going forward.

I asked him if the brain can be trained and he replied of course. So this is a big thing. Due to Kobi being blind from birth we were told by another hospital that he would not see due to the optic nerve but we were adamant a brain can be trained like anything you put your mind too, and we were correct.

But like I said this all depends on the result of the signals to the brain so this is what determines Kobi-Jai’s treatment.

When we know more we will update and keep you all in the loop.

Thank you all so much without your donations and support this could not have happened as Kobi was being left untreated .

Your generosity is certainly getting him care he needs and deserves.

We no longer feel alone with the amount of love and support Kobi-Jai and families are receiving xxx

UPDATE:

Hello all, here’s an update from our visit to Kobi’s surgeon yesterday.

The EDT results from the tests he had done two weeks ago showed function in both eyes, amazing news.

He had a couple of tests yesterday that Mr Hamada was happy with.

Obviously until anything is completed he can not guarantee sight as anything can happen, but he said “I am hopeful that he will see the world “.

So now after a long wait we are waiting on surgery . The cornea transplant and stem cell will go ahead we are just waiting for a space in theatre. This is amazing news for us all especially our handsome boy Kobi .

The left eye is the weakest eye so he will start with that eye so any complications he will know for the better eye.

Thanks all for your continued support and sorry we aren’t very forth coming with updates but we only know what we put up on here. The minute we know we update. So it may be slow but we feel it lol.