Lenora & Elijah’s story features HIE and the loss of a child, and you may find this difficult to read. It’s important to Peeps that we highlight the strength and differences that each of our families show every day, and we’re proud to support families bereaved through HIE. Please reach out to us if we can support in any way.

By Elijah’s Mum, Lenora…

“Elijah was our much-loved second son and baby brother. Following a largely uneventful pregnancy, he experienced a hypoxic-ischaemic encephalopathy (HIE) event at birth and spent his first month in neonatal intensive care.

His first year was challenging. Alongside the appointments that came with his diagnosis, he had three serious hospital admissions as he battled respiratory illnesses, bringing more referrals and specialist support. Much of our early life as a family revolved around appointments, therapies and learning how to navigate a world we had never expected to enter.

We joined the Peeps WhatsApp group when Elijah was around six weeks old. Through it, we found a community of families who understood the realities of HIE. Their shared experiences, advice and encouragement helped us through some of our most difficult moments, and as time went on I hope I was able to support others in return.

Peeps also provided counselling for both me and my husband, helped us complete Disability Living Allowance (DLA) forms and provided equipment grants. Their support made a real difference to our family and continued even after Elijah’s passing.

We were told not to expect Elijah to reach many milestones, if any. Like many parents, we grieved for the future we thought we had lost. But Elijah had other plans. He set his own course, doing things in his own way and on his own timetable. He taught us that a diagnosis can explain some of the challenges a child faces, but it can never define who they are.

Elijah had a huge personality packed into a small body. His infectious smile and joyful nature won the hearts of everyone who met him.

More than a diagnosis

Elijah passed away aged three after a short illness. He leaves an enormous gap in our lives and is missed every day.

Living with HIE brought challenges, uncertainty and many things we never expected to face as parents. Yet Elijah continually challenged assumptions about what his life could be.

Some people saw his diagnosis and wondered what he might miss out on. Elijah answered those questions himself. He showed us that achievement happens in many different ways, that communication is more than words, and that joy can be found in the simplest things: music, sunshine, laughter, favourite foods, a warm bath or the comfort of being with those who love you.

Elijah achieved far more than anyone expected, always in his own way and in his own time. Most importantly, he taught us that a child is so much more than a diagnosis. He was deeply loved, and although we wish we had been given more time with him, we will always be grateful that he was ours.”