Hi 12 years of multiple battles With Doc’s and Social Services

Hello All, our story starts nearly 13?years ago with our son. We were in luck and local specialist had come in automatically recognised son, mother and grandfathers myotonia. With little one in the incubator mother was diagnosed with adult onset had shown signs from Aged 21, doctors were completely clueless for the 7 years before birth of our boy!
Nottinghamshire looked after us excellently! I hope you all will have better luck than us, we moved back to Hampshire, they attacked us as soon as they started stripping Ehc and we said No! Whole family left physiology Damaged And cut off from Social except Disability allowance 4 years ago. Desperately requested help from all charities, advice yes, help they couldn’t. learned/ had no choice but to do it my own! We’re still in Hampshire but can’t change his school after what they and local Disabled Children’s Social Services did to the family. but the NHS Helps where they can. Been Shielding for 6 months looking forward to the next 6 months of Shielding with regular threats from the Social Services and his School. My partner hasn’t been herself since the birth of our last, it took her independence, walking and ability to deal with day to day without support. She has undiagnosed Prenatal and postnatal depression still continuing till this day. Getting help is incredibly difficult from not understanding GP and mental health but neurology understands what we’re going through but can’t get us the help we need. It’s hardest for our daughter who is without condition was his equal when she was 3 he was 7, Who has to help out how and then due to my Kidney Cancer, back to Carer duties day after OP. Just one of Long-term effects of being the only carer for 12 years. Others include PTSD, insomnia (4-5hrs/day sleep, migraines you just have to push through. You do what you have to do and just keep going never give up! That’s what they want you to do. Not a cry for help! just allow yours friends to help and connect with those who you might need help from in the future. If you have to deal with social services and you get that off feeling make sure you have advocacy with someone who really understands the condition is an absolute imperative in that first meeting in their offices!!!