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The Journey So Far...

So getting into writing... Writing about us... Writing about our life... It’s strange and feels odd to be speaking openly about aspects which I don’t normally discuss. But it’s good for me. I never wrote a diary or had the patience to get past what I had for tea. So when I write now it’s because there is something I want to say. And what better than my family?

I have no bloody clue...

Alongside the massively moving blog entries I want to write I assume it will involve more about my love for wine, naff television programs and trying to make myself look presentable in pyjamas at the school gate. Being a mum is tough and in no way do I want to pretend it’s easy. Loads of people ask me how I do it all. The truth.... I have no bloody clue. I make it up as I go along and hope for the best and to be honest I reckon most of us do.


I have two babies; the larger stinkier model Marley who the blog is dedicated to and his little sister Lilia who is equally stinky but very adorable. I became a mother to both of them in very different ways, but I wouldn’t change a thing about either.  

Marley and me...

Marley and me... We’ve been through the mill and our story is a long and complex one, but it’s made us who we are, given us strength, and created a relationship that is stronger than anything else.


We’ve battled through our share of hardships; having nowhere to live, having no money, having no clue what to do next, learning to understand each other. It’s been an adventure, but we made it through.


He’s the best kid I’ve ever met and has me in hysterics multiple times a day. His disability makes him special. Lots of people won’t understand that one but he has a way of captivating the world. A way of making everyone smile. He is everyone’s little friend. If you know him this will make sense to you. A new fantastic advisor described him the other day as the ‘rebel without a clue’ which as weird as it seems is the perfect term of endearment to summarise him.

The mini diva...

Lilia – a slightly different kettle of fish. A princess in everything she does with a diva attitude which would put Mariah to shame. She’s beautiful, silly and shows the most outstanding love and compassion for her brother. Proud is an understatement for when I look at her. 


 She is such a terror though. Everyone assumes if you have a child with behavioural problems then that must take it out of you – but it’s the ‘normal’ one. She’s such a pickle I literally just look at her some days and sigh in exhaustion. But bless her why not? It’s just her way.


 Give it 10 years and I know I’ll have my work cut out; the reason I know that is because she’s just like me!

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An inspiration

More about them later though. I wanted to take you on a bit of the journey so far. Marley was born with various medical problems including muscular dystrophy and a congenital bone condition. 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!


Because of his muscular dystrophy and congenital bone condition he now must use a wheelchair full time, a transition which is difficult for anyone especially a 6 year old little boy. From being a little boy who dreamed with a football in his bed this has been a real change for him. Luckily he has a fantastic support system who is trying to help him every step of the way but of course it isn’t easy. I along with other family continue to adjust to this process. I almost wish some days he had more cognitive understanding so we could really have open discussions about things, some days it’s hard when I know I’m not getting through.


Marley takes a lot of time and attention to care for. Weekly hospital visits and many therapy sessions, schooling and medication costs. Despite being prodded and poked every week with injections and scans Marley is a regular favourite in Faro hospital. Everyone knows his name and he even helps taking his blood and showing other children the fish tank in reception. He really is an inspiration for anyone having a sad day. 

The road to more independence 

Marley was using a large wheelchair which he couldn’t drive himself because of his cognitive ability and with it not being a specialized children's chair that limited him in many ways. He wasn’t able to play with his friends or be at all independent which was having a huge impact on him and us.


Aljezur International School found out about Marley’s situation and immediately wanted to make a difference in buying him a specialized children’s chair.  I used to teach at this wonderful school and I miss it dearly.  The chair is small and meets his cognitive and physical needs.


They organised a fantastic 10km sponsored walk on the 20th of October 2017. Over 150 people attended and we raised a whopping 2000 Euros. Alongside very generous donations from others and a lovely silent auction we managed to raise enough for a specialised children’s wheelchair and an electric chair has now been ordered. We have been so overwhelmed.


The difference this chair has made to Marley socially and developmentally has been a complete game changer. The school says he’s a different child; he’s finally able to play with his friends. He’s finally proud of his chair. I can’t find the words to express how grateful I am. I really have some fantastic supportive people around me.

What does the future hold?

I’m now busy organising more fundraising events for the other equipment Marley needs.  You can find more information

 on our events and donations page.  2018 holds many exciting events for us and I am so motivated to really making as much awareness as possible.


So that’s just a bit about us as a sort of intro... Now onto the hilarious stories and much needed glass of wine!

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