A tip of the iceberg on what we have been dealing with over the last 12 months – Isaac’s Family

A tip of the iceberg on what we have been dealing with over the last 12 months – Isaac’s Family Shares Fresh Updates on his Condition

Over the past 12 months, seven-year-old Isaac a spirited young Liverpool fan  has faced more medical challenges than many see in a lifetime. His family recently shared an emotional and deeply personal update about what he’s been going through, hoping to shed light on the complex and often unseen battles behind his bright smile and boundless energy.

Isaac has long been diagnosed with Wolf-Hirschhorn Syndrome (WHS), a rare genetic condition that affects many parts of the body. However, a turning point came about 12 months ago during a major multidisciplinary team (MDT) meeting at Alder Hey Children’s Hospital in Liverpool, where around 15 healthcare professionals gathered to review Isaac’s development and current health.

In that meeting, Isaac’s family was told that doctors were 99.9% certain he also had Craniosynostosis, a condition where the bones in a baby’s skull join together too early. The diagnosis came as a shock — they had never heard of it before. A more detailed examination revealed other surprising findings, including the fact that Isaac was born without collarbones, something previously unnoticed. He also has a large open fontanelle (soft spot) on the top of his head — which should have closed by now — along with breathing issues, dental problems, hearing loss, global developmental delays, and other symptoms.

His family explained that many of these symptoms had previously been attributed to WHS, and the overlap made it easy to miss additional diagnoses. Though blood tests were recommended to confirm Craniosynostosis, doctors decided there was no urgency, hoping to spare Isaac further stress after all he’s already endured.

In November, Isaac’s mother requested a sleep study due to ongoing concerns about his restlessness at night. Over time, she had noticed several troubling signs — loud snoring, excessive sweating, restlessness, and moments where he seemed to stop breathing.

Isaac underwent a sleep study at Alder Hey just before Christmas. According to his mother, it was a traumatic experience for him due to his heightened sensory sensitivity — even wearing a plaster can be distressing for Isaac. Being fitted with monitoring wires was overwhelming, but he bravely got through it.

In May, the results confirmed her concerns: Isaac had severe sleep apnea. His family described feeling “relieved” to have a diagnosis that matched what they’d long suspected, but also devastated by the confirmation of yet another condition for Isaac to cope with.

Doctors recommended that Isaac begin using a CPAP machine at night to help with his breathing. However, this too comes with challenges — Isaac struggles with anything on his face or skin due to sensory issues. Despite the difficulties, his family says they are committed to working with healthcare professionals to make the transition as smooth as possible.

Delicate Decisions Ahead

Another MDT meeting was held at Alder Hey this week to determine whether it was safe for Isaac to begin CPAP therapy. Because of the open areas of his skull, extra care needs to be taken with how the CPAP mask is fitted and secured.

Unfortunately, the hospital’s ENT team was not present at the meeting, delaying a final decision. Their input is necessary to determine whether Isaac may need tonsil or adenoid surgery before beginning CPAP. Until then, the family continues to wait.

A Mother’s Intuition

Later in the year, in November, Isaac’s mother pushed for further testing. She had long suspected that something was wrong with his sleep. Isaac shares a bed with his parents every night, and over time they had noticed signs that deeply concerned them — heavy sweating, loud snoring, constant restlessness, and even brief moments where he seemed to stop breathing.

These concerns led to a sleep study at Alder Hey just before Christmas. For Isaac, it was a difficult and distressing experience. His sensory sensitivity makes even wearing a plaster uncomfortable, so having wires and monitors attached to his head was extremely overwhelming. Despite the struggle, his mother said he “soldiered on” bravely.

Keep being brave, you will survive.

The results arrived in May and confirmed what she had feared — Isaac was diagnosed with severe sleep apnea. While the diagnosis brought some relief in finally having answers, it also added another layer of worry. Sleep apnea is a serious condition that would now require treatment.

The recommendation was for Isaac to start using a CPAP machine at night to help him breathe properly while sleeping. This raised new challenges, especially because Isaac has a difficult time tolerating anything on his face or skin. Still, his family said they would move forward with the necessary support from his medical team, acknowledging that there was no other option.

Complex Care, Ongoing Uncertainty

This week, Isaac returned to Alder Hey for another multidisciplinary meeting to review his readiness to start using the CPAP machine. Because of the open areas on his skull, extra caution is required with the type of mask and straps that will be used.

However, the meeting hit a setback. The ENT (ear, nose, and throat) team was unable to attend, and their input is essential. They need to determine whether Isaac will require surgery, such as the removal of his tonsils or adenoids, before he can begin CPAP treatment. For now, his family continues to wait for the next update.

Despite the delays, the meeting also brought some difficult but important information. Doctors revealed that Isaac’s skull has not yet fused together, even at his age. This means his medical team is now considering full facial and skull reconstruction surgery in the near future. The hope is that this procedure would help improve Isaac’s breathing, sleeping, eating, and overall development. His family said they had always known this might be necessary one day, but hearing it confirmed was still difficult.

Behind the Videos, a Daily Battle of Isaac, the Young Liverpool Fan

To those who follow Isaac online, he appears to be a cheerful, energetic boy  always smiling, always full of life. And that part of him is real. But as his family explained, what’s shown on social media is only a small piece of his reality. Behind every video is a child facing immense daily challenges, and a family navigating countless appointments, decisions, and unknowns.

Isaac rarely complains, even when he’s scared or in pain. That’s how his family knows when something is truly upsetting him  because he’s usually so calm, so resilient, despite everything he’s going through.

His story is not just one of medical complexity  it’s one of quiet strength, fierce love, and the kind of bravery most people will never have to summon. As his family continues to advocate for the best care and support for Isaac, they hope that sharing his journey will bring greater understanding and compassion to others walking similar paths.