I’m Daniel, on the 10th January 2018 after much anticipation Georgie and I attended Warrington General Hospital for the 12 week scan of our baby, we were given the devastating blow that our baby had Exencephaly And consequently there is no treatment available, consequently the baby is unlikely to survive more then a few minutes or hours.

We have had two subsequent follow up appointments with the consultant who has confirmed the diagnosis and confirmed that there is nothing in which can be done to save baby once born.

For those of you who have never heard of exencephaly, Exencephaly, is a type of cephalic disorder wherein the brain is located outside of the skull. This condition is usually found in embryos as an early stage of anencephaly. As an exencephalic pregnancy progresses, the neural tissue gradually degenerates. The prognosis for infants born with exencephaly is extremely poor.

We now have the heartbreaking duty of planning for our babies end, we need to make a decision on the end of life care for our baby and a hospice in which will offer this.

We have decided to Fundraise £1690 for the purchase of a cuddle cot, if your not sure what a cuddle cot is, it’s a cooling system that preserves deceased babies while their parents grieve. It allows the ability of bringing your child home plus more instead of the usual route of a mortuary. It allows parents to spend quality bonding time with the baby, easing the grieving process.

The £1690 will be used to purchase the cuddle cot. The cot will be used for when the baby arrives to allow us to spend time with our baby. Once finished with, the cot will be donated to a local childrens hospice to allow many more parents the opportunity to bond and grieve.

Both Georgie and I would like to take the opportunity to thank you for taking the time to read our story.

God Bless you all.