Never question a Mother's instinct

Many of you will have heard of the phrase “mothers instinct”; something that others may believe to be a rouse but for me - for us - it is something we believe in. I would even go as far as to say this intuition surpasses a maternal intuition and relates to those they love as well. What leads me to suggest this? Well, in 2018 my now wife, Emily, believed something to be unstable with my health. Time and time again telling me “we need to see a doctor” only to be ignorantly dismissed. As time passed, Emily tenaciously battled my dismissals and resorted to modern technology. She managed to capture me having what we now know to have been a complex partial seizure. Three months later whilst waiting for NHS availability I collapsed on the London Underground. I was later diagnosed with a non-operable Grade 2 Oligodendroglioma Brain Tumour. Emily was right and I have no reservation in admitting it.

So where am I going with this? Why am I talking about myself and not our precious Lily?

Well, Em had a familiar feeling; an unsettling awareness that we needed to see someone. On the 12th March 2024, Lily just 17 months old, Lilian was showing limited signs of being able to walk so we visited our local surgery. A short wait and a brief discussion saw us directed home having been told that we shouldn’t be concerned as “some children don’t walk until they are 2”. Hit that fast forward button again and press play 6 months later - 6th September, Lily now approaching 2 years old of age.

Once again we were off to see the professionals at a local hospital. They very kindly undertook an assessment but, as before, we were once again told that we could go home. No, No, No! We had no intention of leaving and the Doctor's cottoned on to that fairly quickly. One doctor finally conceded that Lilian should be subjected to a CT scan. Having been at the hospital since c. 8:30, numbing cream was finally applied and Lily would be seen… after fasting for another 4 hours.  She fasted, she slept, she played, she slept and finally she was scanned. Come 23:00 we were free to leave, discharged with nothing more than what we arrived with. Results were soon returned which confirmed there were no masses (tumour). The next step would be to have an MRI, the same scan that (the royal) we had asked for in the first place - there’s that instinct again!

“What’s the timeline?”

“Anything from 6-8 week.”

We had seen waiting room walls, pediatricians, physio and occupational therapist, opticians, podiatrists, radiologists and of course, neurologists. Despite what sounds like positive progress with professionals the majority of this was due to paying privately.. The remaining days of September, the entirety of October and 3 weeks into November, the wait was over. Lily undertook her MRI on the 21st November 2024, the scan that would give us conclusive results, the scan that came to change our lives forever.

The MRI reported that Lilian had a rare genetic disorder known as Leukodystrophy. A disorder that damages the white matter of the brain and spinal cord. A progressive, degenerative disorder that will impact far more than a localised area or characteristic. This disorder would take away her ability to move, to speak, to see, to eat, to swallow. Worse yet, this disorder would slowly take our Lily. To add to that, we were told that we had to get Arthur checked to make sure he hasn’t got the same gene mutation that could affect him later in life. So now we know. Now we move forward as best we can. Now we make sure Lilian is as comfortable and safe as she possibly can be. Now we step up to be even better, stronger parents. To face the fate in fear.