My oldest daughter, Neave, suffers from a rare (and presently unique) chromosome disorder, the result of which leaves us in ongoing uncertainty as to the complete effects felt when she grows.

Since her time in the womb, Neave has suffered from both positional talipes and a subsequent deformity in the shape of an enlarged big toe, the latter of which has caused her gait to suffer, and excess walking and standing pressure being applied to that toe as a means of compensating for her struggle with composure and balance.

Over the nine years of her life, this over dependence has led to calf muscle weakness, a tightening of her lower leg muscles, and inversion of her foot as a result of placing bodyweight upon the toe, an action which in itself causes her foot to almost turn completely inward.

These gradual problems recently led to a consultation with her appointed specialist and the prospect of Botox injections prior to potentially inevitable corrective surgery to the afflicted foot. Part of the precursory preparation and pain alleviation comes in the form of daily physiotherapy or in lay terms, the firmly applied stretching of her feet before her bedtime.

While it would be easy to say that this will provide genuine respite from the pain she quite clearly endures when trying walk and stand, I am under no illusion as to the need for surgery to provide any lasting solution to this challenging problem.

Our experience of working with NHS physiotherapists has admittedly been a mixed bag and there are times when it is easier to ignore the advice rather than act upon it, primarily because it becomes emotionally upsetting to be reminded that Neave lives with this struggle and that she will ultimately become confined to a wheelchair or buggy for an extended period once the surgery has wrapped.

There are of course school physiotherapists but our contact with them has been minimal at best, therefore it is hard to critique them with any real proportion; this leaves me with only the few fleeting conversations scattered over the years to reach a fair assessment.

If I were pushed to share my thoughts with other parents I would express that even the smallest amount of support brings you closer to your child, particularly when massaging their affected limbs, not to mention the small window of quality time and the reassurance that they are genuinely cared for. Touch should never be underestimated when used as a means of therapy and even if your experience of physiotherapists themselves might prove painful or foggy, the knowledge gained and then applied is invaluable to both parents and children alike.

Neil Egan-Ronayne