My name is Lucy, and I am asking for help for my son, Archie.

Archie has an exceptionally rare and complex medical condition. Specialists have confirmed there is no known medical literature describing his specific combination of a PTEN-related condition alongside congenital hypothyroidism due to thyroid agenesis. As a result, there is no established treatment pathway and very limited specialist experience in managing his needs.

Archie requires ongoing and intensive medical care, including hospital admissions, feeding support, and continuous monitoring. He is unable to feed and gain weight in a typical way and relies on specialist formula and tube feeding. His condition is medically fragile, unpredictable, and his prognosis remains uncertain.

We have been advised, including by a leading PTEN team at Boston Children’s Hospital, that Archie would benefit from further specialist assessment. This is being explored alongside meeting his current needs within the UK.

Following concerns regarding his care, Archie has been referred for a quaternary level assessment due to the complexity of his condition and the need for the highest level of specialist input.

We wish to be clear about the purpose and use of this fundraiser.

All funds raised are used to meet Archie’s additional needs. This includes specialist medical input, medical-related travel, hospital stays, equipment, and necessary adaptations within the home environment. Funding has also supported an urgent move to more suitable accommodation to ensure Archie’s safety and to better meet his medical requirements.

The support received has also helped to relieve some of the practical and situational pressures we have faced as a family during periods of significant uncertainty, enabling us to respond appropriately to Archie’s needs and focus on his care. It is solely used in connection with his condition and the circumstances surrounding it.

All funds are applied for Archie’s benefit, both for his current care and to allow access to further specialist input where required.

Our priority is to ensure Archie remains safe, comfortable, and appropriately supported at all times.

We will continue to provide updates as things progress.

Thank you for taking the time to read Archie’s story and for your support.

Lucy, Keiron, Jamie & Archie ❤️

Keiron Kershaw, Archie’s Dad, is listed as the beneficiary. All funds, when transferred, go into Archie’s NS&I account. As Archie is under 18, this cannot be set up automatically. Thank you.