Baby Sophia was born on the 21st of August 2024, a gorgeous little girl with loads of dark hair, what we didn’t know then was that Sophia had a rare and incurable mitochondrial disease called Alpers Huttenlocher Syndrome (AHS).

Sophia was with our family for three months and two days, she fought for life every day, she was incredible and so strong, she defied all the time scales the doctors gave her. I was one of the very lucky family members who got to meet baby Sophia, welcome her into our family and then say goodbye.

She had such a strong personality for someone so young and small, stubborn and full of life, she had to work so hard to get the smiles out, but she did. As a family we grieve all the time about the what ifs and how our life would be with her still in it. We keep going and live in the new reality without her.

On the 13th into the 14th of June, we will be taking part in the 24-hour 3 Peaks Challenge in the UK. This involves climbing the highest mountains in Scotland (Ben Nevis, 1,345m), England (Scafell Pike, 978m), and Wales (Snowdon, 1,085m) within 24 hours.

As part of Sophia’s legacy we are supporting ‘the Noah Jordan Foundation’, to raise £100,000 to fund vital medical research into Alper's Huttenlocher Syndrome, the disease that took Sophia’s life for which there is currently no treatments or cure.

This crucial medical research will be facilitated through a three-year PHD research fellowship under the guidance of the charities medical advisors.

By supporting our campaign and donating in Sophia’s memory, you are helping us raise vital funds to undertake this crucial medical research, with their guidance, as soon as possible.

Thank you for supporting Sophia’s legacy in the hope that other children don't have to suffer as she did in the future.

Karen, Natasha and Rob.