Help Support Baby Isaac and His Family

Hi, My name is Ephi and I have setup this GoFundMe page to help support baby Isaac and his family through this heart-breaking time.

On July 7th 2025, our beautiful great nephew Isaac came into this world 5 weeks early. Instead of his parents being able to take him home, everything changed within hours of his birth. Isaac was transferred to the neonatal intensive care unit. It was in there where he had his first seizure and his oxygen dropped to a dangerously low level.

Isaac has been diagnosed with two rare genetic conditions. Paroxysmal extreme pain disorder (PEPD) which affects less than 1 in 1,000,000 people worldwide, and Erythromelalgia, affecting 0.25 to 2 per 100,000 people and is extremely rare in babies.

What this means for Isaac is he experiences multiple excruciating pain episodes daily in various parts of his body, accompanied by seizures and a severe drop in his oxygen levels, which require him to be given oxygen via a mask. His tiny body is very fragile and under enormous stress. These episodes are triggered by bowel movements, crying, eating, being too hot or too cold, stress and even touch.

One of the hardest things for his parents, my Niece and her partner, has been to see their son in unimaginable pain, and watching him turn blue when his oxygen drops is terrifying.

Right now he is surrounded by doctors, nurses and machines. Now try and imagine when they are able to take him home, having to deal with these horrendous life long conditions without this support. It is heart-breaking beyond words.

At home, life is already very difficult, they have two young children, one of whom requires significant extra care due to special needs. Now with Isaac in hospital, his father has been unable to return to work due to juggling hospital visits and child care. Both parents are under unbearable emotional strain - while also facing the harsh reality of mounting bills.

Whilst the family is helping to support them in every way possible (emotionally, physically and financially), it is not enough.

No parent should ever have to choose between being by their sick child’s side and paying the bills. We want to help give them the gift of time, security, and peace of mind while they walk this incredibly difficult journey.

This fundraiser has been set up to help support them with basic living costs for the next year - helping with mortgage, food, and day-to-day expenses so that they can focus entirely on caring for their children and standing by Isaac during his fight - even though it will be the rest of his life.

Can you imagine watching your child suffer like this every day knowing that you can do very little to help them? This is what they are going through.

❤️ How You Can Help:

Please consider making a donation, no matter the size. Every contribution makes a difference.

Share this page widely with friends, family, and communities. The more people who hear Isaac’s story, the greater the support we can give.

Your kindness and generosity will help lift some of the financial burden weighing on this family and allow them to focus on what matters most: being there for their precious baby.

From the bottom of our hearts, thank you for reading, sharing, and donating. Together, we can give this family the strength, security, and hope they desperately need during this unimaginable journey.

Much Love and Appreciation in Good Health,

Ephi Raymond (Great Uncle)