Oakley has recently been able to partake in 2 intensive courses and has taken his first unaided step! We still have a long way to go and all of your donations make a huge difference and we are so grateful for all the support.
Oakley, is just three years old and cannot walk, talk or eat. I have had to put my career on hold to care for him full time which sadly means, I am unable to afford the extra therapies he needs to make his life a little easier.
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 months in and out of both our local hospital and Great Ormond St 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 Oakley’s future and how his needs will progress. We have been told that Oakley could reach a certain age and lose all his skills and deteriorate, possibly quickly. Because of this Oakley at 3 years old is under hospice care.
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 there 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.
As well as using his walker daily Oakley also has multiple medications every 4 hours, oxygen, deep invasive 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.
In order to go to school Oakley requires 2 paediatric nurses to accompany him as he is at such a high risk medically that even a specialist school don’t feel comfortable meeting his basic needs.
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