Rocco is the 4th child in the family and there was no family history of this genetic condition, as you can imagine it has come as a huge shock.
The condition is very sereve and one that is terminal and life limiting with most babies dying between 8-12 months, and it exceptional for children to live past 2.
Rocco is missing the crucial snm1 gene meaning he has no protein in his spinal cord and is unable to use many muscles such as his arms, legs, or hold his head.
This condition not only affects the limbs but also the breathing and swallowing. At a point in the future rocco will need help using a bipap machine to breathe and suction machine to help with secretions. And possibly be fed through a peg tube.
This all means Rocco needs constant care and attention day and night for all his needs.
There is no cure currently for sma but there is a treatment and he has recently started having nusinersen injections via lumber puncture at great Ormond street hospital. This drug is from America and he is receiving it on an extended access programme.
Rocco also needs a lot of physiotherapy and hydrotherapy in order to help the injections and maximise his potential and life.
As you can imagine as a family we want to do everything we can for Rocco and private physio and hydrotherapy every week is very expensive. Which is why we are asking for donations in order to keep being able to provide him with the care he needs, as the nhs will not be able to assist as often as necessary.
I will give regular updates as to Rocco health and this campaign.
Please help us keep our baby boy here and healthy as long as possible.
Kimberley and Wesley