Epilepsy and ME/CFS

[Chimbelina]

My son has posted a video/slide show on YouTube, set to some of the Songs from the Sofa he has recorded at home, which have helped him on his journey these past five years.

It is to raise awareness about living with both these conditions in a hard to break cycle. Please support him in raising awareness by visiting Rhys Jupiter a Voice for Young Epilepsy on You Tube . . . And 'Share' it has taken a lot of courage for him to post it.

Thanks 😊

[Ian123]

youtube.com/watch?v=bYnTTMu...(Not working as expected?)

[TheAuthor in reply to Ian123]

Thanks Ian.

[rosewine]

Noticed Ian had posted the link for this so I will watch it with interest. My OH Has Epilepsy of the temporal lobe kind and the tablets make people so tired it is sometimes difficult to function and to be young and to be suffering with these other conditions must be hard. As you say it had taken great strength of character to do this. Tell him he is very handsome by the way, are we ladies allowed to say that - Oh well I have so there.x

[Chimbelina in reply to rosewine]

Thank you so much. Rhys suffered greatly with schools failing to understand the early symptoms which is why we want to raise awareness far and wide so please share and help spread the word. It is such an isolating illness so I will definitely pass on your comments to him which will reach through that isolation and connect him with LIFE! If you want to hear all of his Songs from the Sofa which support the video, message me again 😊. And oh yes the Ladies are definitely allowed to sa y he is handsome 😉👍🏻!

[phlebo123]

Just watched his video..... words fail me..... it had me in floods of tears.... it was beautiful, haunting, ....please tell him from me what a talented, courageous, and delightful young man he is, and what a credit to you and your family he is.

Truly amazing.... xxxxx

[Chimbelina in reply to phlebo123]

Thank you so much for your comments and I am glad that it touched you in the way Rhys hoped it would - a brutally honest portrayal but also uplifting and inspirational.

Rhys was 11 when he first started getting brief absences. This then progressed over time to generalised tonic/clinic and clusters, and last year was his worst. Finally he is beginning to have better control of his seizures on high doses of medication.

He is such a positive young man who faces his challenges and never gives up hope. Please send our very best wishes to your nephew 😊

[phlebo123]

Forgot to say... My nephew who is 12years old was diagnosed with epilepsy last year... Will definitely tell him to watch it... hopefully it will be a great inspiration to him!

[Chimbelina in reply to phlebo123]

Oh and you can really help to raise awareness by 'sharing' far and wide

[TheAuthor]

Just watched it and it is quite emotional. Thank you so much for sharing this it is a real eye opener.

All my hopes and dreams for you both

Ken

[Chimbelina in reply to TheAuthor]

Thanks . . .😊