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My Boy, Duchenne & Me

Not just life as a mother, but an unexpected one as a mother of a son with Duchenne Muscular Dystrophy

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Author: Jo Eames

Mother of two children, wife to Matt. Searching for a cure for DMD
Shielding from Covid-19

Shielding from Covid-19

May 4, 2020May 4, 2020 Jo EamesLeave a comment

49 Days, 7 weeks into this journey! Trying to protect our son from the unknown. The bad days/moments are becoming more frequent. This past week was very hard, very emotional. ‘Mummy school’ is feeling low and deflated. ‘Mummy school’ still has her work to do. ‘Mummy school’ is starting to feel hemmed in. It’s frustrating… Continue reading Shielding from Covid-19

What is rare?

What is rare?

February 25, 2020 Jo EamesLeave a comment

We are all our own rare breeds aren’t we? We all have our own little quirks, habits, rituals, behaviour, manners ….. these can be annoying or endearing – it all depends who you are and who you affect with them. The majority of people choose to behave in the way they do – learned or… Continue reading What is rare?

4 years on

4 years on

January 28, 2020January 28, 2020 Jo EamesLeave a comment

4 years into this journey – a journey no one could ever imagine unless they walk the steps we do each and every day. I read back on my blog that I wrote in the days leading up to William’s diagnosis, the affects of how a simple telephone call can change the world as you… Continue reading 4 years on

Turning 7

Turning 7

January 15, 2020January 15, 2020 Jo EamesLeave a comment

What a 6th year my boy has had. We’ve crammed in lots, because the unknown is always there and we want to enjoy more laughter and smiles each and every day. A lot of changes have happened this year, firstly the positives for my wonderful boy: he’s taken up and loves horse riding; he began… Continue reading Turning 7

Reflection

Reflection

January 1, 2020January 1, 2020 Jo EamesLeave a comment

So much has happened in 2019. We have so much to be thankful for, so many people to remember who have helped enhance our lives, and all for the same reason – William. His story has touched so many. At the very start of this year I made two big choices to step down from… Continue reading Reflection

7/9 Duchenne Awareness Day

7/9 Duchenne Awareness Day

September 6, 2019 Jo Eames1 Comment

7th September is a date now etched in my diary, not for anything other than to raise awareness of the rare fatal genetic condition my son has, it’s not an Anniversary I wish to celebrate, but one I feel I have to. 7/9 depicts the 79 Exons on the Dystrophin gene. Just one small fault… Continue reading 7/9 Duchenne Awareness Day

A summer of hospital

A summer of hospital

August 29, 2019August 29, 2019 Jo Eames3 Comments

Today marks the eighth hospital visit (plus opticians) this summer holiday for little William – I am now fed up with it, I can only imagine how William is feeling. (And little sister Phoebe who has also come to every appointment too) It’s amazing what one email can do…. 3 months ago a simple message… Continue reading A summer of hospital

Kicked in the stomach

Kicked in the stomach

June 6, 2019June 6, 2019 Jo Eames2 Comments

It’s like being kicked in the stomach or stabbed in the heart when you hear the words at your son’s 6 monthly review of ‘no improvement’ or ‘decline’. I hadn’t thought we would hear such things for years, as on the surface William looks like he is doing so well. He is growing, developing, having… Continue reading Kicked in the stomach

There is overwhelmed, then there is me right now

There is overwhelmed, then there is me right now

April 5, 2019 Jo EamesLeave a comment

As many of you know our Big Build started nearly six weeks ago now. We have done so much to enable us to get to the start point, just to be able to say ‘Yes let’s do it’. Not just the saving, but the amount of meetings with advisors, builders, architects… just to make sure… Continue reading There is overwhelmed, then there is me right now

Balance – getting it right

Balance – getting it right

March 18, 2019 Jo EamesLeave a comment

I’ve written before about ‘me time’ and focusing more of my time on the things that are important to me. But, until now, all I’ve really done is added things to my schedule of life – like running. This is great for me mentally and physically, but really it’s just adding on top of all… Continue reading Balance – getting it right

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Defending William Against Duchenne

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Email: defendingwilliamagainstdmd@gmail.com

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Account Number: 83768740

Sort Code: 20-05-73

 

All proceeds donated into this unincorporated charity will be used for the development, wellbeing and happiness of William Eames. 

 

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My Boy, Duchenne & Me
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