Sophie was born with a rare genetic condition called Cardiofaciocutaneous Syndrome (CFC) — a condition so uncommon that it affects just 1 in 810,000 people, with only around 1,500 families worldwide living with this diagnosis.

Sophie, 10 months old, from Co. Antrim, is a bright, beautiful little girl who has already shown more courage than most of us will in a lifetime.

Sophie’s Medical Challenges

Despite her young age, Sophie has already been diagnosed with:

• Multiple cardiac conditions, including pulmonary valve stenosis, aortic arch hypoplasia, and PFO

• Atonic epilepsy and infantile spasms

• Obstructive sleep apnoea

• Hypotonia (low muscle tone)

• Feeding difficulties, requiring NG tube feeding

• Visual impairment

Each of these conditions brings daily obstacles, but Sophie meets them with incredible strength, resilience, and a fighting spirit that inspires everyone who knows her.

Why We Need Your Help

We want to give Sophie every possible chance to reach her full potential. To do that, she urgently needs consistent access to specialist therapies that go far beyond what the NHS can currently provide. These include:

• Physiotherapy

• Occupational therapy

• Feeding and speech therapy

• Intensive therapy blocks

• Specialist developmental equipment

These therapies are vital for helping Sophie build strength, develop motor skills, improve her coordination, and support her overall development. They give her the best chance at a fuller, more independent future.

However, these services come at an extremely high cost, and the level of support Sophie needs simply isn’t affordable without fundraising.

Thank you