Team Archie & Ava
Archie’s first 4 months of life were very difficult as he had malrotation of the bowel and intestines that hadn’t 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 hyperinsulinism, 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 he’s a very happy little boy who loves life and lets nothing stop 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’s 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 mitochondrial disease so we’re fighting harder than ever to find a cure so that it can help Archie, Ava and many others.
How to support Team Archie & Ava
Archie and Ava’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
