Our son Finley was born with a rare lymphatic malformation which affects his airway. He has a tracheostomy to breathe which severely affects his, and our, daily lives.

After spending six months in hospital after his birth, we found it hard adjusting to life as medical parents of a disabled child. Our aim was always to give Finley as normal a life as we possibly could and despite the challenges he faced he was living life with gusto - talking walking, eating, attending mainstream nursery and heading to mainstream school in 2026.

Unfortunately in January 2025, Finley suffered a massive seizure completely out of the blue and not linked to his existing condition. His seizure lasted 1 hour and 20 minutes. He then developed a rare radiological state called ALERD (acute leukoencephalopathy with restricted diffusion) which required intravenous immunoglobin and steroids. He spend several weeks on a ventilator again in Southampton's PICU and heavily sedated and paralysed.

An MRI on his brain after the IV treatments showed devastating damage to his entire brain. Neurologists told us that he wouldn't make any more of a recovery that when he was at that time. Our darling boy went from being a charming, lively, engaging, intelligent and hilarious toddler to being unable to eat, drink, move, walk, talk, sit up, hold his head up or even eye track. We were completely broken.

We were discharged on April 7th 2025 after three long months and since then have dedicated every moment of our lives to Finley's recovery. As well as the NHS offering of weekly physio and OT, we are attending private specialist DMI physio, speech and language therapy, hydrotherapy, play therapy and a chiropractor. Each appointment costs anything from £45 -100.

Any funds raised here will go directly towards enhancing Finley’s life and recovery whether it be through memory making experiences or equipment and treatment that we cannot access through the NHS.

Thank you for your ongoing support and kindness.

With love,

Gemma, Keith & Finley xxx