This problem encompasses various medical problems including cerrebular problems, muscular and bone conditions derived from this genetic connective tissue disorder.
This is where his muscles, tendons, ligaments and bones are all on the same “control” system, whereas in most of us, systems are linked but autonomous. However this is just a name, not a cure. He has a global delay which affects many things in his body such as his speech, hearing and understanding.
Marley is suffering from inter cranial pressure and spinal instability alongside suspected grey matter heterotopia which needs surgery as soon as possible. This kind of pressure causes damage to his sight, hearing, speech and movement and already has caused significant changes.
Readers throughout Portugal have given strong support to Marley and now there is a breakthrough in his treatment.
Dr Gilete, (https://drgilete.com/) a world famous Neurosurgeon & Spine Surgeon from the leading Hospital Teknon in Barcelona has agreed to make the initial consultations with a view to operating on Marley.
This is the only hospital in Europe with the medical team able or willing to perform this operation, it is such an advanced speciality. This hospital is not part of any national health service so their skills do not come free of charge.
The initial examinations and tests which will be performed on 4 September and take one week, will cost 20,000 euros. Marley’s mother Kate has been able to make the deposit of 20 percent from funds already generously donated, but she needs to find the balance by August.
Once in Barcelona they will then know further costs for operation procedures and treatment, which could see the budget stretched even further.
We are appealing on behalf of Marley for help in raising these funds, any opportunity to increase Marley’s life span and quality of life is not something anybody would turn their back on, and Kate, Marley’s mum, will do whatever it takes to help her son, as we all would.
If you are a club or association, will you organise an event or appeal to help raise funds, The Portugal News will endeavour to publicise any such events.
Marley has a Crowd Funding site, https://www.justgiving.com/crowdfunding/marleyswheels where individuals can donate and obtain additional information.