When your body attacks your brain how does it feel. I do not know. All I can do is watch the effects unravel before my eyes. It’s been 4 weeks since Kade has attended school. He has just left in his taxi. My heart aches that he will not see one person today that truely understands what he’s gone through. Having to explain to his taxi driver that he wants to go to school however if they reach the school and he needs to come home, just bring him home.
Kades basal ganglia has been under attack for 2 years and 4 month’s. That is the part of your brain that controls everything, it’s the control centre and it’s being bombarded by antibodies that are trying to destroy it. That is the bottom line.
Kade will recieve his ivig on the 4 weeks again this time round then we will try 6 weeks again. He is keen to space out his treatment.
Long term we do not know what the future holds for Kade. When will he make a full recovery and be able to live life with out treatment to keep him stable and just live his life with no interruptions. For the last year he has functioned well for three weeks at a time, then the week of his treatment is a non-week, a week of resting and recovering.
My hope is a future where pans/pandas is addressed quickly and treated efficiently. I am greatful of the online support groups pans/pandas uk and pans/pandas uk support group. With out these places, where you can talk to others who are battling to save their own children’s futures, I do not know where we would be right now. These groups have given me the strength to never give up, even on the darkest days you know you are never ever alone.
The pans/pandas uk support group have applied for charity status. Behind this group are a power house of parents who refuse to give up and are changing the future of our children. Within the groups are other parents and we are all joining hands to raise awareness and make the change that so desperately needs to happen. I am happy to be going to a Scottish meet up of parents soon where we will make plans to tackle this head on.
It is not ok that these children are being left for months and years to deal with this condition with no medical intervention. It is not ok that this disease continues to be over looked and misunderstood.
The longer the child goes untreated the more damage is done and then it becomes harder to control and the problem more difficult to fix. It is a viscous cycle that I am seeing constantly within other people’s stories and our own.
Living one day at a time we are going to fight this right to the end. I believe that one day my son and the many other children who’s parents I have spoken to will make a full recovery. No stone will go unturned no child left behind.