The story begins on the 13th April, I was tucked up in bed at 11.30pm when I received a call from Sam. “Rob has had a fall, he’s cracked his head open. We’ve called an ambulance; can you pick me up from the hospital?” “Is he okay? Of course, I can.” A few minutes passed and Sam calls back sounding a lot more distressed. “It’s really bad, its cracked open to the skull, he’s crying and I just can’t do anything to help him.” “Do you want me to come down?” “Robbie, do you want Sam to come down? Yeah he does” “Alright we’ll be there soon”.
The ambulance took too long to come, and when calling to check up on an ETA they advised we were best driving him ourselves. So, we loaded Robbie in the back of my car and another friend JT jumped in the back with him to prop his head up and my partner drove. It was a scary drive, but as we were approaching the hospital Robbie had started to recover from the shock and started to make his lame old jokes.
I think the hospital was a bit taken aback by the amount of people in the emergency room escorting the one person. Another car of friends had also followed us to the hospital. When the nurse came to change his makeshift dressing to a proper one I could tell by her reaction it was bad.
Shortly after we arrived his parents arrived too, and we were all kicked out. Luckily, I am close with his parents, so we got regular updates. Whilst he was in hospital they discovered that he had muscle weakness and he was referred to a neurologist.
Once he was discharged he had to play the waiting game. Waiting for his neurologist appointment. Waiting for an MRI. Waiting waiting waiting. During the wait between his neurologist appointment and his MRI he had another fall. When he was on his way to work, he fell over onto tram tracks in front of a tram. He had people help get him to work and from there his Dad drove him to the hospital. This time he was in for 8 days. He had the MRI, and a CT scan. They ruled out this and that, and then a few more tests which gave him his diagnosis. Motor Neurone Disease. Lou Gehrig’s disease. Amyotrophic Lateral Sclerosis. Bluntly put, a death sentence, and one of the worst kinds. He wasn’t clumsy, he was sick. When I named this page “Help Robbie Live” I didn’t mean help keep him alive, because heart breakingly that’s not possible, but we can help him live life to the full!
Motor Neurone Disease is when neurones fail to work normally. Neurones, which are nerve cells control the muscles that enable us to move, speak, breathe, swallow. In MND these neurones will gradually weaken and waste and eventually degenerate and die. With these neurones dying Robbie will lose the ability, gradually to move, speak, swallow and even breath. On average once diagnosed the average life span is up to 5 years, with 10 percent of people lasting up to 10 years. We’ve all got our fingers crossed for Robbie to beat these odds.
After his diagnosis, we expected Robbie to spiral into depression and really struggle. But he’s taken this as a challenge. He’s been so positive, so brave and unbelievably strong. I am so proud in how well he’s taken his diagnosis.
Which brings us to why we’ve created this page. Rob has a bucket list. Whilst some things on that list are inexpensive, crossing everything off will cost a decent amount. And unfortunately, even though he’s dying, he still has to pay his bills. And sadly, being sick can be expensive. Medical bills, time off work for appointments, modifications to his home, taxi fees once he can no longer drive it all adds up.
Any donation no matter how big or small is greatly appreciated.
When Robbie has completed writing up his bucket list we’ll be uploading it and keeping everyone updated on what he’s crossed off with photos too.
Thank you so much!