Steren Nessa was our shining star that completed our beautiful family on 8th July, at an impressive 10lb 8 3/4s!!!

Steren was a content, happy little girl who brought light too so many. Ellowyn was a proud, protective big sister who loved her just as much as Mark and I. Within the first few weeks Steren thrived wonderfully.

At around 4 weeks Steren dropped a few centiles but still gain (not as much as she should). This was put down to her finding her weight due to being such a big baby. As the weeks progressed, small things started to happen, reacting to her milk, sleeping longer, dropping bottles or not finishing them. Then at 8 weeks old Steren showed signs of jaundice.

On the 10th September we took Steren to Treliske Hospital (our local hospital) where she baffled the Doctors. They discovered her Liver was larger than it should have been and her blood levels showed signs of needing further investigation! We were then transferred to Bristols Childrens Hospital on the 14th September where the bombshell was dropped on us...... Steren showed signs of Liver Failure with a working diagnosis of Mitochondrial Disease. At this stage the Consultant stated that Steren only showed signs of the mitochondrial disease affecting her liver, which would be incredibly rare.

After just over three weeks at Bristol, Sterens Liver deteriorated further and she went Acute Liver Failure and needed moving to a Liver Specialist. On Sunday 7th October Steren was transferred to Birmingham Childrens Hospital, where after further investigations and numerous tests, it was decided Steren needed a biopsy to determine what was going on with her Liver and at the same time get a muscle and skin biopsy to help diagnosis the Mitochondrial disease!

Due to the GA and biopsies, Sterens little body was not strong enough and she needed help with her breathing and was moved to PICU. Over the next few days Steren slowly deteriorated, needing more and more intervention and support and on the 23rd October Sterens little body could no longer muster the energy to fight. As Parents we had to make the decision no parent should ever have to make and turn off her support. Steren passed away peacefully in our arms.

Please join with us to support The Lily Foundation to help change the story for other families affected by Mitochondrial Disease. As a UK charity dedicated to fighting Mito, they fund vital research to find a cure and also support families to live with the condition.

You could do anything, donate directly, take on a run, bake cakes, hold a quiz - the options are endless. By creating a fundraising page from here, any money you raise will go towards Steren's fundraising total and make her legacy such an important one. She may have only been small but she touched so many peoples lives and will continue to do so in the years to come.