Oakley is 4 years old and has a rare genetic disorder as well as dyskinetic cerebral palsy. 

Because of this Oakley has very complex medical and physical needs. Oakley has spent many months in and out of hospitals. Oakley has 24 hour tube feeds into his jejunum, regular deep suctioning, nebulisers, oxygen, medications and constant medical support. 

Oakley has a team of nurses who help him inside and out of the home. Oakley is also under the local children’s hospice. 

As Oakley’s condition is so rare we don’t have a prognosis for him and his future. Therefore we are fundraising for viral therapies and equipment for him. None of which is available on the NHS. Oakley has attended a few intensive therapy courses to date and has made outstanding progress. He is so determined and puts his all into the therapy he does. He is an absolute inspiration and all the therapy will help him live the most independent comfortable life he can. 

Thank you for supporting us on this journey to give Oakley the best chances xx 

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