Kian was born 5 weeks early in August due to him stopping growing in my pregnancy he weighed 5lb 1.

He did everything you’d expect a baby to do reaching his milestones with our only concerns not drinking enough milk.

Kian was hospitalised in November with meningitis since then it went downhill. He had an MRI in our local hospital which showed up brain abnormalities so blue lighted to Bristol children’s hospital. Further tests were done which showed high lactate acid and several seizures, we were later told he had mitochondrial disease and there is no cure and no treatment.

The next day he had more seizures and was put on a life support machine because his breathing was so shallow and we were then told there was nothing they could do. All this happened in just 3 short weeks, we took him to a children’s hospice where they switched off his machines and told we would just have a few minutes to say goodbye.

Kian surprised us all and gave us another 16 hours to cuddle kiss and just be there together with no machines no beeping and no wires. Kian was a really happy baby. I’m so proud he was ours if only for a short time. 5 and a half months to have had him here with us. And a lifetime of love.

We later found out that I am a carrier of Kian's gene, we don’t know what the future holds for me, but we were able to go on and do PGD IVF and have a healthy baby boy Theo, who is now 9 years old. I also fell pregnant naturally and had a test to confirm no mitochondrial detected we had a healthy daughter Darci.

We owe so much to The Lily Foundation for there continued support. We do our best to raise what money and awareness we can. Thank you all.