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

Archie is a baby with an exceptionally rare and complex medical picture. There are only a very small number of children in the world with the same combination of conditions and complications that Archie has. This rarity means there is no clear pathway, no standard treatment plan, and very few specialists who truly understand how all of his needs interact.

From very early on, it became clear that something wasn’t right. Since then, our lives have been consumed by hospital admissions, feeding tubes, weight loss, investigations, and constant fear about what tomorrow might bring.

Archie struggles to feed, to gain weight, and to tolerate nutrition in a way most babies can. He relies on specialist formula and tube feeding just to maintain his weight. Even with this, progress is fragile and unpredictable. Every decision – increasing feeds, procedures, anaesthesia – carries risk because of how medically complex and medically fragile he is.

There are no clear answers, no defined roadmap – just a growing sense that time matters far more than anyone is willing to acknowledge. Watching your child deteriorate while waiting for referrals, reviews, and decisions is something no parent should ever have to endure.

We have been told by specialists, including a leading PTEN team at Boston Children’s Hospital, that Archie is too complex for remote opinions and needs to be seen in person by experts who have experience with children this rare and medically complicated. Unfortunately, accessing this level of care through the NHS has been incredibly slow and fragmented. We are repeatedly told to wait, to watch, to see – while Archie’s condition continues to worsen.

This situation has affected every part of our family. Archie’s dad, Keiron, is constantly torn between trying to continue working and being at the hospital, supporting Archie and holding our family together. Archie’s brother, Jamie, has also had his world turned upside down — sharing his parents with hospital wards, uncertainty, and worry no child should have to carry.

This fundraiser is not about convenience or jumping queues. It is about last-resort care. It is about trying to give Archie the best possible chance to be supported properly, by private specialists who can look at the whole child rather than isolated symptoms. It is about buying time, stability, and informed decision-making for a baby who deserves more than uncertainty. It’s about being proactive instead of reactive.

The funds raised will be used for:

• Private specialist consultations and discussions for highly complex paediatric care in the UK & globally.

• Specialised equipment and support to help Archie at home ensuring he has the best quality of life possible and ensure his surroundings are safe and appropriate for him within the home.

• Travel and accommodation if Archie needs to be seen outside our local area or abroad.

The main goal of all of this is to ensure Archie is cared for properly anywhere, everywhere and has the best quality of life that he deserves - whether that’s in the form of treatment, equipment, support, adaptations. We will make sure he is always comfortable and supported.

Every day we live with the fear that without the right intervention, we may lose precious time we can never get back. We are not asking for miracles – we are asking for expert eyes, informed care, and a real chance for Archie to live and be with us for as long as possible.

If you can donate, share, or simply keep Archie in your thoughts, we are endlessly grateful. As parents, it is devastating to know that help exists, but only if you can afford to access it.

Thank you for reading Archie’s story. Thank you for standing with us when we feel like we are fighting this alone.

❤️

Lucy, Keiron, Jamie & Archie