Kaylan was born at 28 weeks premature in 2016 with 2 grade 4 bleeds on the brain, this resulted in Kaylan having cerebral palsy which affects all four limbs and is unable to walk or manage day to day tasks. He is also servely sight impaired and has Hydrocephalus (fluid on the brain) which resulted him to have a shunt to drain the excess fluid, Kaylan is a very sensitive little boy who struggles with the adhd and autism and sensory overload. From the age of 3, Kaylan had a safe space bed to keep him not only mentally but physically safe for sleeping. Kaylan recently underwent more surgeries to be fitted with a colostomy bag and PEG, aswell as a new shunt this year, due to this we have needed a high-low profile bed for Kaylan but also a bed that is suitable in order to keep him safe, but also goes high and low to meet his daily needs. We were stuck and needed a bed ready for Kaylan coming out of hospital which resulted in an adult high profile bed which he has already banged his mouth/head and body off which has caused him and also us as parent to be distressed and anxious due to not having a suitable bed. The response from the occupation therapist was to “put bubble wrap around the bed” which is not acceptable at all from a ‘professional’ in charge of Kaylans needs. I am currently sharing a single bed with Kaylan in order keep him safe from falling off and causing himself more injury, this is not ideal for a long term solution, either for myself or for Kaylan.

The oasis cot bed had been mentioned to ourselves which resulted in a representative coming out with the occupational therapist and letting Kaylan decide colours and even given a prescription for the bed and giving us positivity and hope that Kaylan could have a sense of independence, hope and reassurance of Kaylans’ safety. Now this has all changed and we have now been let down and disappointed by his occupational therapist, even though she had sent hopeful messages about getting the bed. I had a meeting on the 26th of April and not a soul to back my corner and they decided they want Kaylan to go into a low profile bed with no sides at all and just a crash mat to land on if he was to fall (remembering he can’t get himself back up or has very little sight) with sensors under. This was absolutely soul destroying to hear as we are still no further forward and Kaylans safety is still compromised. We are also not allowed baby gates on his bedroom door or stairs. Kaylan doesn’t sleep most of the night and when he does he does a lot of spastic movements in his sleep which causes him to jerk and roll. He also has a lot of over sensory problems which results in him hitting himself, hitting his head and harming himself. That bed is unsuitable and he could really hurt himself not only physically but mentally with not knowing surroundings or able to catch himself from falling. We feel betrayed by the service and they are not taking kaylans safeguarding in hand at all . My child or anyones child should NOT be thrown into danger especially with special needs. Now this is why we are asking for your help to help us raise the £8,600 for the bed we have been quoted for which the representatives have given us.

To keep Kaylan safe and give him the rest he needs and comfort! Even if it’s 50p or £1 we couldn’t thank everyone enough for the support!