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Fundraising, Friends and The Virtue of Patience

So 2018 has been quite a rubbish start to the year. Marley is now being cared for full time at home and his medical care is taking priority. Off school, lots of medication and a huge change for my little family.

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I have had to change all aspects of my life to become a full time carer for the time being. I don’t know how long until we get sick of each other but it’s going ok so far! It’s been a massive turn around and being around each other constantly has really given meaning to the phrase ‘patience is a virtue’.

Through our fundraising last year Marley now whizzes around in his very special wheelchairs. Thanks to everyone’s amazing generosity Marley can be much more independent. He’s really proud of his special chairs and calls his electric one his ‘Sonic’ chair. He also finds it hilarious to run me over... The kindness everyone has shown has been so astonishing we really are very lucky. So despite our year not going as well as we’d hoped so far at least he’s really enjoying this aspect of his life!

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Whilst seeing the private surgeon for Marley’s eye problem we were alerted to the fact Marley has severe cerebral pressure. Things are all starting to make sense with collapses over Christmas, a swollen liver and spleen and alerted us to very urgent and serious problems which needed to be treated. The big issue and question mark with genetic conditions is that sometimes really important signs can be ignored as so little is known.

We are now awaiting him to be ready for cerebral shunt surgery as soon as possible. This was suggested to us around a year and a half ago. Subsequently they said it wasn’t top priority as there was flow of the cerebral fluid – something which shouldn’t have been put aside. This is not the case now and obviously a huge worry. From my perspective he’s been incredibly let down and I am grateful to now have the specialists helping us in place. Working together and most importantly communicating!

Since seeing various specialists and consultants Marley now has to undergo various treatments, procedures and testing for him to be ready for surgery. He’s gotten ever so thin but smiles day by day as he’s poked and prodded.  

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I am hoping to start to get some insight with the genetics department if there are any links to a gene mutation which could help us in the future to indicate what problems might occur. It’s like fighting a constant battle with new areas constantly appearing. We don’t know how much this is all going to come to and I think it will develop over time so we are trying to do as much fundraising as possible.

We have been utilizing the state system as much as we can however some tests and procedures we just can’t wait for the state to approve. We need to see specialists across the country or potentially abroad as soon as possible.

Time is a massive factor. In order for Marley to get the help he needs as quickly as possible we want to raise the support for specialists, tests, surgery and subsequent issues. This has now become our priority.

The Marley Benefit

The first fundraising event this year which is being organized is 'The Marley Benefit'. We will be having a lovely meal with live music. We invite everyone to enjoy a fantastic evening on the 15th of March in Quinta do Paraiso, Carvoeiro. Fantastic cabaret acts, auction and raffle supported by local businesses. We are lucky enough to have a program full of music and dance with musicians such as Big John, Danny Maverick, Abba Divaz and Daddy Jack! It isn’t one to be missed, please get in touch to book tickets for the Algarvian Event of the Year!

Book here!

Run For Marley

Asides from the amazing people who are organizing the Marley Benefit I also have some really great friends completing some very extreme challenges to try and raise money for the Marley Benefit.

The lovely Marie Hindle has been training hard with her running. Marie wants to try and raise as much money as possible for Marley’s cause and complete a 21km marathon on the 15th of March called 25abril in Lisbon. If anyone else wants to join the run please get in touch! Get your sponsors in!! You can do this by sending us an email, contacting Marie directly or sending a sponsor through our Just Giving link below. Please comment on your donation saying ‘Marie’!  

Just Giving

Jump For Marley

Then we have family friend Grahame Weston who is afraid of heights turning 50 in March! To celebrate he wants to try and raise as much money as possible for Marley’s cause and complete a skydive with his children Sam and Molly on the 25th of March. The three of them want to celebrate by paying it forward and are hoping might be able to tempt others into jumping too. If anyone else wants to join the jump in Alvor please get in touch!  If you want to sponsor Grahame, Sam or Molly please get in touch with them personally or donate through the Just Giving link below and include the word JUMP in your donation!

Just Giving

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If you wish to get involved in our fundraising initiatives, want to donate or even have an idea for our blog or YouTube channel I'd love to hear from you.  Plus don't forget to subscribe!

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