Team Kian
Kian was born five weeks early in August due to him stopping growing in my pregnancy, weighing just 5lb 1oz. 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 and then it went downhill. He had an MRI in our local hospital which showed up brain abnormalities, so he was 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 was 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; we were told there was nothing they could do. All this happened in just three 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 be 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. Five and a half months to have had him here with us. And a lifetime of love.
We later found out that I’m a carrier of Kian’s gene, and we don’t know what the future holds for me. But we were able to go on and have PGD IVF, and now have a healthy baby boy, Theo, who’s now nine years old. I then fell pregnant naturally and had a test via CVS which showed no mitochondrial disease and we had a healthy daughter, Darci.
We owe so much to The Lily Foundation for their continued support. We do our best to raise what money and awareness we can. Thank you all.
How to support Team Kian
Kian’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
