Hi, my name is Chloe. I am Auntie to our little Coby bear.

On 18th April at 11am, I will be abseiling the Spinnaker Tower to help raise more funds for treatment for our little Coby. This will include support with treatment, physiotherapy, hydrotherapy and making his journey more comfortable.

As people are already aware… Coby recieved the one time Zolgensma gene infusion 3 month ago.

Luke, Charlotte and Coby travelled to Bristol yesterday for his 3-month review and unfortunately his treatment hasn’t worked. His CHOP assessment showed deterioration rather than improvement which is how medical professionals measure it.

it will be going to an NHS England panel with hope he can receive further alternative treatment. This is because once they’ve had gene therapy they don’t usually qualify for further treatment, but this is what will keep our Coby alive and thriving! All we can do is keep our fingers crossed and keep Coby centralised in our hearts.

please take time to read his story and give a little that will support the family entirely. We are hoping in the wait of the NHS England panel that we can start some further treatment to prevent further deterioration.

this little boy is our world