One of Sarah Sea’s favourite memories is from a Spanish holiday she went on with her two sons. Getting up early one morning, the family carefully made their way to the beach to watch the sunrise over the ocean. ‘Phoenix loved being by the sea,’ Sarah remembers.
‘It was his happiest place to be.’ Her youngest son, Phoenix, had been diagnosed with Infantile Neuroaxonal Dystrophy when he was just 18 months old. She was warned that this rare degenerative disease could mean her little boy wouldn’t live to see 10.
It was a diagnosis that shocked Sarah to the core, because although she had spotted a few concerning symptoms, she never thought it would have been so serious. Soon after, she made the decision to take her sons away for a break in Lanzarote so they could digest the news together. ‘Phoenix hadn’t deteriorated as much and was still quite small so I could carry him easily,’ the 48-year-old single mum tells Metro.
However, in the weeks and months that followed, Sarah could only watch as the toddler began to lose skills he had only just developed like walking, toileting, eating solids, and talking. The following year, when Phoenix was three and her eldest nine, she planned another much-needed holiday. But this time, he required lots of equipment as he was no longer able to stand or keep his head upright.
Sarah also had to add a food blender, neck support, specialist pram, oxygen canisters, and heaps of other medical equipment to their holiday packing list, al.
