Oakley's Journey To A More Mobile Future

Oakley was born at 37 weeks weighing 4lb 6oz. Within 24 hours of being alive he was given resuscitation breaths twice and suffered from seizures and jitteriness. Since coming home from hospital we have spent weeks in and out of both our local and GOSH for treatment and therapies. Oakley has been diagnosed with quadriplegic dystonic cerebral palsy as well as a rare genetic condition PAK 3 mutation. This condition is so rare it has only 13 recorded cases worldwide to date. This means therefore we are unsure on Oakleys future and how his needs will progress. Oakley has unfortunately had regression in his oral motor skills and digestive function meaning he is tube fed for 20 hours a day into his jejunum and has his stomach constantly draining. He cannot speak and says limited sounds. He has, however, learnt to use basic Makaton as a way of communicating. Oakley currently uses a walking frame to get around and he is so desperate to be independent. We have recently attended his first intensive course abroad and the progress Oakley made in three days here is more than we have seen in the last 6 months at home. As a result of this we would love to be able to take Oakley on more of these courses and fund specialist equipment to aid his treatment. These, however, come at a huge cost. I have had to put my career on hold to be Oakley's full time carer meaning he is not getting the extra therapies he needs. I would love to be able to take Oakley on more intensive courses in the next few years and fund a standing frame to help Oakley's posture and chest secretions. The NHS will only fund one for school use. As well as using his walker daily Oakley also has multiple medications, oxygen, suctioning and nebulisers to manage his secretions and daily physio for pain management. It is our dream for Oakley to live the most independent life he can and one day to walk unaided and pain free. He has the biggest smile on his face no matter what he is facing.