Kaisons sight of life

Kaison was born 09/07/20, with 4 very severe eye conditions which wasn’t picked up during pregnancy.

Kaison “wouldn’t open his eyes” when he was born, after 7 hours of waiting for him to open his eyes, a midwife came in and told us he was going to be blind and there was a possibility of 5 things it could be- 1. Genetic. 2. Chromosomes missing 3. His eyes haven’t developed during pregnancy 4. I caught an infection during pregnancy 5. Brain damage and then handed kaison back to us, and left the room never to be seen again.

On the 17/07/20 when Kaison was 8 days old, we went to Rochdale Eye Hospital, to be told he was too young and we was being referred to Manchester.

We then was told he couldn’t be seen until October, I then spat my dummy out, and we had an appointment on 08/08/20 where we was told Kaison had Bilateral Microphthalmia, Which is a development disorder and is where the eye is abnormally small, Bilateral Coloboma, and optic nerve coloboma. Coloboma of the optic nerve is a congenital eye abnormality in which the optic nerve (which carries images of what the eye sees to the brain) is incompletely formed and that the structure of Kaisons eyes are wasn’t present.

Microphthalmia and coloboma occurs in approximately 1 in 10,000 individuals.

Since this we’ve then been told he also has Sclerocornea, this is a rare a congenital malformation disorder in which the cornea and other aspects of the front part of the eye do not develop normally and microcornea.

These eye conditions are very rare and all cause blindness. Kaison is the only baby we’ve yet been told about who’s got ALL conditions in BOTH eyes, we come across people with 2 of the conditions together in 1 eye, but not all of them in both. Microphthalmia and uveal Coloboma are very rare to have together in both eyes.

We’re under going different tests such as genetic testing, MRI scans, ultra sounds and were doing everything we can to fight for our little boy, and get everything put into place in which he needs and we won’t give up.

We don’t yet know if kaison has any useful vision until he’s old enough to tell us.

We are beyond devestated as a family, but we are focusing on the best possible day to day opportunities and the immediate future and how reaching milestones will differ for Kaison.

Every day we are researching into any possible medicine and help which could benefit or help Kaison.

We are currently having a sensory room built at home too help Kaison reach every milestone and as you can imagine everything for the room and what he needs is extremely expensive.

Kaison has recently just had conformers fitted, these are small marble like shells which open his eyes and help the sockets to grow. These are taken out each night and put in each morning. New moulds will be taken and he will have these for life and possibly coloured Prostetics in the future. 

We have recently just been accepted by Professor Nicola Ragge who’s to the worlds best geneticist who specialises in Kaisons conditions and is based in Birmingham so hopefully she can help and guide us in the right direction for help and support.

We want to share every milestone and journey with everyone and understand how we may celebrate things differently and we’re open to any support groups etc which may benefit our precious little man.