Ophelia-May My Life My Story

Hello everyone

My name is Ophelia, but everyone calls me Phi. I am currently 2 and a half years old. For a while now, doctors have been testing different things, as unfortunately, I don't crawl or walk. Finally, after a very long time, my Mammy and Daddy were given some news.

On Monday 24th February 2025 I was diagnosed with Spinal Muscular Atrophy.

Spinal Muscular Atrophy (SMA) is a rare genetic disease that causes muscle weakness and wasting, and affects the motor neurons that control voluntary muscle movement. The weakness usually worsens with age and can impact a child's ability to crawl, walk, sit up, and control head movements. 

Unfortunately, there is no cure for SMA, but there are treatments to support me with some normality in my life. I have a long journey ahead of me, but my Mammy and Daddy are focused on providing me with the best possible outcomes.

Today, I was admitted to Noah's Ark hospital in Cardiff and after meeting with professionals, I have been informed that I have SMA type 2. I will start my treatment tomorrow, 27th February.

My Parents are raising funds for my treatment. For example, private physiotherapy can complete 12 months worth of physiotherapy over a three week period, however, this comes at a cost of £5,000.

You can keep an eye on my journey and see how I am getting on.

This is My Life - My Story

Ophelia-May x