Just been told my son has cerebellar atrophy

HerosAreUs · 2025-05-22T22:10:18+00:00

Hi all. I am looking for advise from anyone who's children has similar condition to my son. Our 4yr old has been undergoing investigations for a long time because he has global developmental delay(currently 0-11 months developmentally). He has very poor balance, low muscle tone and he also has tremors. He recently had an MRI and some bloods done. His MRI shows that he has cerebellar atrophy and his bloods are also out of range and suggest he has a genetic disorder. The neurology team want to do some more tests on him and repeat MRI in the future to see if the atrophy has progressed. We are worried sick. Please can anyone share any stories or advice? Has anyone's child been diagnosed with this but managed to live a normal life?. We have been told not to panic until they know more but we can't help but worry about our son. Especially with Google!! We knew something was going on with our boy because of his delays etc but we didn't expect this. We are so worried for his future. Hopefully once they know what the root cause is, they'll be able to treat it 🤞

Lasm · 22/05/2025 23:23

I don’t have any advise on CA. But… I’ve been where you are with my son who’s now 12. He has CP, with a global dev.delay aged 6 months…. Don’t panic. It’s a whole new world but I promise you once you get your head round it, you’ll get up to speed. Listen to the neurologists - they know more than anyone… take their advice and create a good relationship, get the secretary’s name so if you have questions you can fire off a quick email. It’s never easy and your post reminded me of myself all those years ago… it’s get better, you adapt, you learn so much and amongst it all you have this gorgeous little human who’s amazing… it’s easy for me to say but accept and learn as much as you can now, be positive and be a kick ass voice for your child! As for his future, it’ll be as bright as you make it… I’ve trekked my boy across Europe and America determined to ‘live normally’ it’s not easy as the world’s designed for the neuro typical and able bodied BUT it’s changing all the time and you can do anything! My boy is the best thing that’s happened to me! Would I wish for a disabled child… no … but I’ve been blessed with one and he enriches my life more then I ever imagined.
I know you’re scared but I promise you, a good attitude, a good relationship with your neurologist and absolute determination to advocate fully for your boy will be your greatest job!
I’m sending you lots of love and strength, you’ve got this 💪🏻

NautilusLionfish · 22/05/2025 23:28

Lasm · 22/05/2025 23:23

I don’t have any advise on CA. But… I’ve been where you are with my son who’s now 12. He has CP, with a global dev.delay aged 6 months…. Don’t panic. It’s a whole new world but I promise you once you get your head round it, you’ll get up to speed. Listen to the neurologists - they know more than anyone… take their advice and create a good relationship, get the secretary’s name so if you have questions you can fire off a quick email. It’s never easy and your post reminded me of myself all those years ago… it’s get better, you adapt, you learn so much and amongst it all you have this gorgeous little human who’s amazing… it’s easy for me to say but accept and learn as much as you can now, be positive and be a kick ass voice for your child! As for his future, it’ll be as bright as you make it… I’ve trekked my boy across Europe and America determined to ‘live normally’ it’s not easy as the world’s designed for the neuro typical and able bodied BUT it’s changing all the time and you can do anything! My boy is the best thing that’s happened to me! Would I wish for a disabled child… no … but I’ve been blessed with one and he enriches my life more then I ever imagined.
I know you’re scared but I promise you, a good attitude, a good relationship with your neurologist and absolute determination to advocate fully for your boy will be your greatest job!
I’m sending you lots of love and strength, you’ve got this 💪🏻

What an uplifting response. Thank you for your kindness (in sharing your story). Your boy is lucky to have you

Lasm · 22/05/2025 23:31

@NautilusLionfishhe's an absolute monkey but he’s the best….

Lasm · 23/05/2025 08:20

@HerosAreUs I hope you’re ok xx

Original poster

HerosAreUs · 23/05/2025 08:24

@Lasm thank you!! What a lovely response. We do take the approach of... Focus on what he CAN do rather than what he can't and we take what life throws at us and deal with it as positively as we can but this has been an absolute blow. 💔
To learn that his condition is progressive is just awful. He's the sweetest little boy. But we will make sure that everyday is as full as possible and make the most of every moment!!
We are praying his condition is treatable and the progression can be slowed down. That's the next step with his Drs.
Thank you so much for your positivity!! 💐♥️

OP posts:

Lasm · 23/05/2025 08:48

HerosAreUs · 23/05/2025 08:24

@Lasm thank you!! What a lovely response. We do take the approach of... Focus on what he CAN do rather than what he can't and we take what life throws at us and deal with it as positively as we can but this has been an absolute blow. 💔
To learn that his condition is progressive is just awful. He's the sweetest little boy. But we will make sure that everyday is as full as possible and make the most of every moment!!
We are praying his condition is treatable and the progression can be slowed down. That's the next step with his Drs.
Thank you so much for your positivity!! 💐♥️

@HerosAreUsgood girl 🙌🏻 here if you need a chat or any advice ♥️

Castlereagh · 23/05/2025 11:18

I'm really sorry you're going through this. What I would say is what is seen on a brain scan or a genetic test doesn't define what your child's life will be like or what his quality of life will be like. I have seen two children with the same brain injury in the same place end up with totally different levels of disability (but both with a great quality of life).

I would also say doctors are detriment focussed - they focus on the fault as that is their job. They are also highly achieving academic people often from privileged backgrounds or pressured schools who focus on intelligence and abilities. They often won't have gone to school with or socialised with children with disabilities growing up. So they don't focus on the joy and happy relationships and the positive difference children with disabilities can make in peoples lives.