Joe's Journey is about my amazing 19yr old son Joe, and hopefully getting him the help and support that he's so desperately needed for so long.
He was born with mild Aspergers, ADHD and rare Sighted Non-24 Sleep Awake disorder
If you have ever been jet lagged, this is how SN24 makes you feel every day!
My moment of absolute heartbreak, was when he came into my bedroom at 4.18am, sat on the end of my bed and sobbed because he felt so unbelievably tired, but still couldn't sleep, despite the highest doses of sleeping meds. "Mum...why can't I sleep even though I'm so tired?"
His depression and anxiety is getting worse. Not only has the impact on him been life-changing to say the least, but on the family as a whole. Our household sleep routine is now defined by Joe's lack of routine. My other son had to leave school at 12 and be home educated as his attendance was so low due to the lack of sleep. Evening meal in our house is now usually between 3-4 am.
We have fought so hard with countless NHS Doctors and Neurologists, to try to get them to listen and understand! He just gets bounced between different doctors who don't understand SN24. He needs to see someone who actually specialises in Sighted Non-24, as it it so rare.
...so, the next step (and the reason for this campaign) is to take him to a private medical Specialist in SN24.
If you are reading this, and by any chance, know anything about SN24 please contact me!