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Dear Sir or Madame,
I am writing to you on behalf of my six year old son Marley. Marley was born and lives in the Algarve and is a Portuguese citizen. He is a Sporting fanatic. He loves football, Mario super brothers and the colour green. His dream in life is to probably become a minion and he 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 these genetic connective tissue and neurological 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!
This kind of letter is very hard to write, so I am allowing a friend who is also doing some fundraising to set the scene for me...
"It is often said you meet people for a reason and this certainly seems to be the case when the ever smiling Kate crossed our doorstep a few years ago selling organic vegetable boxes and offering a gardening service. Over time we came to know her and found out that that she had 2 gorgeous children. Marley & Lilia. We also found out that life is pretty tough as Marley has a number of serious health issues which affect his day to day quality of life and that the support structure in the Algarve is pretty grim.
In time we now understand a lot more about what the family’s needs are that you would think the local authorities would help with, but unfortunately the local health services simply do not have the resources for. Some of this is basic medical care, some advanced medical care with private treatment required and some is very specialised equipment which has to be custom ordered and all of it is ridiculously expensive. The list is endless and the family live and work in an environment where the day to day expenses are taken care off, but the additional costs of Marley's diagnosis and care is not. He is 6 and as he grows older and bigger, his needs are becoming more urgent. He attends a private school funded by his parents as this is the only way he is able to be schooled in Portugal as the state schools will not accept his special needs. The family work hard to provide everything they can, but now admit they need some help."
It has taken considerable thought and effort to admit that we will need some help and it has been through friends who have already been fundraising to help buy some essential items like new wheelchairs to allow Marley to have a degree of independence that we have now been put in touch with organisations and businesses such as yourselves to see if you can offer any support.
Marley is suffering from inter cranial pressure and spinal instability 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.
So now sadly Marley is now being cared for at home as his medical care is taking priority at the moment. He has not been able to attend school for over 6 months and is very heavily medicated spending the majority of the time in hospital due to abnormalities which were detected and needed to be treated before surgery.
It’s like fighting a constant battle with new areas constantly appearing. We have been utilizing the state as much as we can however some tests and procedures we just can’t wait for the state to approve.
Specialist genetic surgeons are rare to find and insanely expensive. The state does not have the resources, knowledge of ability to operate on Marley which is why he must be operated on privately. Medical procedures, appointments, scans, private consultation and travel currently are ongoing costs on a weekly basis and will be increasing massively when surgeries can take place. Medication alone is more than 150 Euros per month. Once this surgery is out the way follow up procedures and operations to help his eye lids and palet will also be necessary.
As we wait through the state we realize 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 problems which are day to day are covered by the state however the larger jobs and operations are not and are going to take too long if we wait. He requires help now, he cannot wait longer. There is no way we can get him all the assistance he requires.
We are asking for donations however small to get through the approaching medical obstacles as fast as possible. I have had to stop working to care for him and need him to recover from surgeries to lead the most normal life he can do. Once his medical costs are covered I can concentrate on getting him the equipment he needs to be as independent as possible in our home. This is currently not equipped for his needs.
You can see more from us from our donation link:
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Once this nightmare gets easier I want to be able to help other parents with similar problems. For now I need to keep my baby safe.
Please let me know if you would be able to offer any assistance, be it financial, advice, support, connections, in fact just about anything would be gratefully received.
We have fundraising events planned for this year however we have decided to reach out to as many people as we can as quickly as possible to try and get him the help he so desperately requires asap.