After a very smooth pregnancy we had our lovely little boy Henry.

He was lovely and healthy looking and everything was fine, but one day he became distressed and as we got home I tried to feed him but he would not take it. I tried to make an appointment at out of hours doctors when my husband said 'forget the doctors, ring for the ambulance'.

By the time they arrived he was barely alive, fading away in Richard's arm. The paramedic was trying to revive him and we were rushed to the hospital.

The doctors in A&E began to start to try to resuscitate him, I am not sure how long we were there watching them but in the end they stopped.

He died at 18 days old.

We were told after the post mortem that he had a heart condition and it may be ok to have other children as chance of this reoccurring was low.

The coroner's report took 6 months because of further investigation in mitochondrial depletion and we were told that the two things together caused his death. I was three months pregnant by then.

We were told about the odds and given a standard information sheet on mitochondrial depletion, which sounded dreadful. After amniocentesis we were given 50% chance for a healthy baby as they thought they found a suspicious gene.

Thankfully both of Henry's brothers are OK.

Very few people have heard of Mitochondrial Disease, yet everyday in the UK a child is born who will develop the condition. At the moment there is no cure and too many lives are lost.

We are setting up this fundraising group to support The Lily Foundation, a charity dedicated to supporting families, raising awareness and funding research to find a cure.

Please join us by donating directly to this page or even taking on your own challenge in Henry's memory.