Today is #RareDiseaseDay, which is an annual day that has been set up to raise awareness of rare diseases 
This day is very close to my heart because of course on 29 November 2013 Frankie was born sleeping, and it turned out he had Chromosome 15 Duplication Syndrome, a syndrome so rare it doesn’t even have a proper name. Had he lived, he would have had severe physical and mental disabilities; I already knew from scans that he had a severe cleft lip and palate, and talipes that couldn’t be manipulated, meaning he wouldn’t ever walk, and I was prepared for that and prepared to be a 24-hour round the clock carer for my son. But my being a mother wasn’t to be, so I threw myself into my work instead and I continue to do that to this day.
It was so cruel that he had such a rare disease and he was taken away from me, and I often think why me and why did it have to be my son. But with that said, I would not have wanted him to suffer, and he was spared from a lifetime of pain and suffering had he lived. I truly believe that some kind of higher being was looking down on me, and Frankie was taken from me to spare him a lifetime of pain and suffering. And for that, I am very grateful 
I am sharing this to raise awareness of Rare Disease Day, and also to raise awareness of the fact that not everyone gets a happy ending when it comes to being parents. I am an empty armed mother, and I miss my son Frankie so much and think about him every day and about what should have been. But I will never stop talking about him or raising awareness, because he DID exist, and he is the reason why I do everything that I do
