As the Love Some1 With GLUT1 campaign comes to a close, I have been thinking about what GLUT1 means to me.... as a parent of a child with GLUT1.
It means I am one of a small number of parents trying to navigate this world. Not much is known and there are so many differences that it is hard, for me at least, to feel like I can get a hold of what life will look like in 5, 10, 15 or even 20 years.
The biggest challenge I face is to not feel inadequate or like a failure when I see other patients achieving things Ella hasn't been able to.... from riding a bike to being in line with peers academically. Also, knowing that no matter how many hours I put in to making keto masterpieces, Ella will turn her nose up meaning she has a mic-key button when others dont. I find this harder because all Ella wants is fruit and veg.... which she used to eat all the time pre diagnosis when I felt like I was nailing this parenting malarkey!
The gap between patients is staggering.... some are wheelchair bound fully, non verbal and fully dependant. Others are performing in line with the peers in all areas and are looking likely to live a "typical" life.
As a parent, I read on forums of other families struggling to come to terms with what their childs life looks like.... comparing notes and questioning why their child isnt the same as the child who does appear neurotypical.
We all love our children with every fibre of our being and want the best life for them.... it is just hard when the research is limited due to funding and the gaps are staggering and all you want to do, as a parent, is to provide your child with the best chances!
That being said, should you be able to find a spare few £'s €'s or $'s please donate to the GLUT1 Deficiency Foundation. The more research, the more understanding, the more clarity and that will give families like mine hope for the future! ❤❤❤ #GLUT1 #glut1ds #SENParent #destinationunknown #charity #donate #family #love #rare #lovesome1withglut1 #LoveElla - 17 seconds ago