Marley is a 6 year old little boy from the Algarve. He loves football, Mario super brothers and the colour green. His dream in life is to probably become a minion and is the happiest boy in the world.

Marley was born with Marfans Syndrome and Poretti Boltshauser Syndrome which encompasses various medical problems including cerebral problems, muscular and bone conditions derived from genetic connective tissue disorders.

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, understanding etc. Despite this he is a super hero!

Marley is suffering from inter cranial pressure, grey matter heterotopia and spinal instability which needs surgery as soon as possible. His genetic conditions are causing catastrophic damage crushing his spine into his brainstem. This kind of pressure causes damage to his sight, hearing, speech and movement and already has caused significant irreversible changes. Surgery is critical.

Marley is now being cared for at home as his medical needs are taking priority at the moment. He has not been able to attend school for over 6 months and is now totally dependent. He is now unable to hold a glass, be able to secure himself sitting, and his speech is deteriorating. He must wear a collar to protect his neck from causing what doctors describe as ‘internal decapitation.’

We have built and continue to build, a medical team around us in Portugal, to try and keep his degenerative disease at bay and focus mainly on keeping him as comfortable and safe as possible. In the Algarve there is NO genetic team who can even assist so all his care is funded privately as we simply don’t have the time to wait for the ‘system’ to pull through.

There is now a breakthrough in Marley’s treatment and world famous neurosurgeons and spine surgeons in Barcelona have agreed to operate 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 were undertaken in Barcelona and that alone cost 20,000 euros. This has exhausted all funds raised so far. It was made clear that Marley needed specialist equipment at home as his condition worsens, and so there was no choice but to order this, even without sufficient funds. Someone did bless us with this emergency equipment which we are ever so thankful for.

The operation Marley now needs urgently, for the cranial instability, treatment pre and post op, and associated costs will be 80,000 euro minimum, plus associated costs for extra days recovery in hospital before he can fly home.

We are appealing on behalf of Marley for help in raising these funds. Any donation is so gratefully received and please share our story so it can reach people who may be able to help. Every penny really does help and we are so grateful for everyone’s kindness. Any opportunity to increase Marley’s life span and quality of life is not something anybody would turn their back on.

If you wish to find out more or about how to get involved in crucial fundraising please check out the blog at www.marleyandmum.com