So this happened earlier this week. Another huge step for us as a family and another bleak reminder of what Duchenne is doing to our precious little boy. As he cannot climb into the bath (and never has been able to) part of our adaptations on the house last year included planning a hoist system… Continue reading The hoist. The sling. Our hammock
It’s fun BUT it is for a cause.. Please educate your children as to why they are wearing jeans/non-uniform today. Please donate that pound. You’re doing it to help raise vital funds for children with genetic disorders – like William. He needs a cure, he needs your help. You don’t know if your child will… Continue reading You’re wearing Jeans because THEIR Genes need YOU!
A picture tells a thousand words but in this case simply, Duchenne. My daughter bounded up the hill whilst I had to help my son struggle up this hill like we seem to do with so many literal ‘hills’ through his life. There are smiles, but behind that there is severe anxiety. Anxiety which breaks… Continue reading Anxiety
To Care or To be a Carer….. Is this the same thing? I often ask myself this question when I’m reminded that I not only ‘care’ for my son, but I am actually a ‘carer’ of my disabled son. Many people may not realise that a loving parent to a disabled child is actually not… Continue reading To Care
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
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 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
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
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
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