Raising funds for a special needs bed!

Hey, my name is charmaine and I'm a mummy to a beautiful 2 year old boy called Harry, since Harry has been born he's been in and out of hospital, going through lots of tests, treatment , therapy, Harry has been diagnosed with an extremely rare genetic disease called Bainbridge-Ropers syndrome, this causes behaviour problems, gastrointestinal issues, constant chest infections, problems with eyes, hearing loss ect, Harry also has sensory processing disorder, allergies, decompensated esotropia, autism (waiting for diagnosis but professionals are certain) gastroesophegal reflux disorder, short stature, failure to thrive, global development delay, right sided weakness, wears splints for severe ankle rolling, bilateral cheek ties which we are awaiting for the specialists to be involved, polydipsia and polyuria! The genetic specialost has said Harry will never be independent, never talk, and that as he gets older his self injurious behaviour will get worse due to frustrations, they also dont know Harrys life expectancy. With all this going on Harry is very often frustrated, and due to his autism and genetic disease he is very prone to self injurious behaviours which has resulted in Harry smashing his head on anything and everything, Harry smashes his head through the night on his cot, the wall ect, if we move his cot away from the wall he Will smash his head on the cot bars extremely hard, if we put him in a travel cot as it's softer he will seek out the metal bars at the bottom and smash his head, he's been doing this since 5 months old, we are trying to raise funds for a special needs bed that is all enclosed and padded, Harry can't be in a single bed as he's a massive danger to himself due to his sensory issues, we as a family are struggling to get a full night's sleep between is due to needing to be with Harry through the night to stop him hurting himself, he currently shares a room with his brother as my room isn't large enough to have his cot in, and jayden is desperate to have a peaceful nights sleep. Having the padded bed will ensure Harry can be safe whilst expressing his sensory needs, we will be ever so greatful for any donations received, we have gone through several charities but as Harry currently was discharged from occupational therapy they can't help as he needs an OT assessment, Leicestershire disabled children's team point blank refuse to send an OT out for a bed assessment to get a special bed for unknown reasons! We keep getting passed from pillar to post and are becoming desperate now, thank you for reading and sharing /donating, it means alot!