Help Caleb Walk
Donation protected
Caleb had a really difficult start to life, he was only one day old when his seizures started. They were relentless, he had anything up to 17 seizures in a day. Following his birth, he remained in hospital until he was 10 weeks old, when finally his seizures were under control.
Four years on Caleb does not have an official diagnosis, he has many problems which include a rare genetic condition (15q 11.2 microdeletion, this condition has no name), this may be responsible for his Global Development Delay, meaning he hasn’t reached any milestones. He's unable to speak or communicate in any way, has feeding difficulties which requires him to be fed by PEG, which is a tube straight into his tummy, and Caleb has Epilepsy.
Caleb has Dystonic Quadriparesis, this causes his muscle tone to be very tight and muscle spasms. This is both painful and very frustrating for him, as he is unable to control his movements as he intends them. Caleb has little head control, which means he is unable to sit or stand.
Physiotherapy is extremely important for Calebs development and early intervention is absolute key to helping Caleb towards gaining head control and in turn, the ability to sit, then stand and hopefully walk. Without any physio, Calebs limbs would probably tighten, leaving him unable to have any chance of normal movement. We provide basic daily physio to the best of our ability, following training provided to us. To present Caleb has only received physio via NHS on a monthly basis, therefore we have struggled to fund physio sessions privately on a weekly basis. Private physio is very costly, added to which I resigned to be his full time carer, it is a constant worry.
Essential equipment is provided, however, there are continous improvements to aids available on the market, but may not be deemed as essential by the NHS, but which we feel could help Caleb develop. Unfortunately anything which is labelled special needs comes at a cost, including toys which could potentially help with gross motor skills.
Difficulties aside, Caleb is a beautiful boy, his smile is so infectious and lights up any room. Although he can’t communicate, it’s easy to read his quirky sense of humour. He loves nothing more than company and attention from others, he particularly loves to see other children. His determination and tolerance to all he endures is inspirational.
Caleb is loved, loads & loads & loads & loads & loads more.........
Thank you for taking the time to read Calebs story so far, and for any donations as every penny helps. If you haven't done already please do share x
Four years on Caleb does not have an official diagnosis, he has many problems which include a rare genetic condition (15q 11.2 microdeletion, this condition has no name), this may be responsible for his Global Development Delay, meaning he hasn’t reached any milestones. He's unable to speak or communicate in any way, has feeding difficulties which requires him to be fed by PEG, which is a tube straight into his tummy, and Caleb has Epilepsy.
Caleb has Dystonic Quadriparesis, this causes his muscle tone to be very tight and muscle spasms. This is both painful and very frustrating for him, as he is unable to control his movements as he intends them. Caleb has little head control, which means he is unable to sit or stand.
Physiotherapy is extremely important for Calebs development and early intervention is absolute key to helping Caleb towards gaining head control and in turn, the ability to sit, then stand and hopefully walk. Without any physio, Calebs limbs would probably tighten, leaving him unable to have any chance of normal movement. We provide basic daily physio to the best of our ability, following training provided to us. To present Caleb has only received physio via NHS on a monthly basis, therefore we have struggled to fund physio sessions privately on a weekly basis. Private physio is very costly, added to which I resigned to be his full time carer, it is a constant worry.
Essential equipment is provided, however, there are continous improvements to aids available on the market, but may not be deemed as essential by the NHS, but which we feel could help Caleb develop. Unfortunately anything which is labelled special needs comes at a cost, including toys which could potentially help with gross motor skills.
Difficulties aside, Caleb is a beautiful boy, his smile is so infectious and lights up any room. Although he can’t communicate, it’s easy to read his quirky sense of humour. He loves nothing more than company and attention from others, he particularly loves to see other children. His determination and tolerance to all he endures is inspirational.
Caleb is loved, loads & loads & loads & loads & loads more.........
Thank you for taking the time to read Calebs story so far, and for any donations as every penny helps. If you haven't done already please do share x
Organizer
Rita Kutt
Organizer