Archie's first 4 months of life were very difficult as he had malrotation of the bowel and intestines that had not been diagnosed. He then developed sepsis from this; after recovering he had a Ladd’s procedure in November 2020 to correct the malrotation.

Archie has a very complex background including hypoketotic hyperinsullinism, variants in the pdss1 gene and is registered blind. He has to eat every 90 minutes to keep his sugars stable and is on a continuous overnight glucose feed via his gastrostomy peg). He has low muscle tone, struggles with pain and extreme fatigue, but despite all this is a very happy little boy who loves life and lets nothing stops him from doing what makes him happy.

Ava was born in 2021 and it became apparent very quickly after birth that she also had a metabolic condition.

At 4 days old she was fitted with an NG feeding tube. She has now just started reception at school and at 4 years old had her tube removed – hopefully for good if she keeps thriving.

They lost their cousin last year at age 15 to this disease so we are fighting harder then ever to get a cure found so that it can help Archie and many others.