• Female
  • Cardiff, Wales
  • United Kingdom
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Danielle's Discussions

Useful technology for the DMD older boys

Started this discussion. Last reply by Ann Avery Jan 31, 2009. 6 Replies


Danielle's Page

Profile Information

About me:
I'm 27, and live in the U.K. Myself and my sister were the main carers for my brother, Frankie. My mum was ill, and so we were his parents.

Frankie passed away a few months ago (aged 19) and we're all so sad and miss him so much. To be honest, I still feel like an active parent, not a bereaved parent. I thought I'd join to talk to other parents, but to also offer tips on how we dealt with things, on great pieces of equipment, or the hard decisions along the way etc.

I work for a charity (Fair Trade Wales) and I have a psychology degree. I care about people and the environment. I've been a carer all my life, and anything else is just part-time, caring for Frankie is always first!
About my family:
Frankie, frankie, frankie!

I also live with my partner, Adam, who is amazing!

And I'm close with my sister as we parented Frankie all our lives.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
19 or older

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Comment Wall (21 comments)

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At 7:36pm on January 3, 2013, kimmy watters said…

danielle i  am very sorry about your brother  , i love your pictures of  frankie, thank you very much for  starting this site, my best friend in the untied state son has dmd i  to have phycall changeless   but  that is not going to stop me  from finding a cure  to dmd. kimmy

At 10:38am on November 11, 2011, Jeferson Marques Machado said…

Hello Danielle, I have DMD and his brother 20 years and I really liked what I saw, especially in the photos. After all he seemed so happy as I am, because the important thing is not how it ends, but the way we conceived before he arrives. I would love to keep in touch with you. After a long time running away from that I do not want to hear, now I feel ready to face whatever comes ahead. Could you hand me your e-mail?
Thank you for your attention.

At 6:38am on October 28, 2011, Christine Davies said…

It's been a while and I was a wee bit stressed last time we met.  how are you and thanks for starting this page for us here in the U.K.

Hoping you, Adam and your sister are well and enjoying life!

We are all well and Benjamin is loving his new school and i am almost on top of things again.

Hope to hear from you soon.

Christine x

At 12:45pm on April 15, 2009, Lorraine Davies said…
Hi Danielle, It's Alex's brother Ethan who is into wrestling, although Alex is a bit of a star spotter and has met alot of famous people.His favourite was Peter Mayhew(Chewbacca from Star Wars) and his most recent was Cherie Blair at our local hospice. Looked at your pictures of Frankie and it looks like you had so much fun , memories that you will keep forever. Lorraine x
At 11:20am on April 12, 2009, Ian Anthony Griffiths said…
I'm not up to much over Easter, I never really go anywhere, I like staying in my house. I've seen my niece and nephew, their cool kids, I bought them some chocolates!! Got my own stash too hehe. What are you up too over Easter?
At 9:23am on April 12, 2009, Ian Anthony Griffiths said…
oh I see, on some forums you reply on your wall, its confusing lol. I hope you get that piece of art very soon, it'll look fantastic :) Hope your well!
At 12:48pm on February 28, 2009, Cathie Bullis said…
What a wonderful life you and your sister gave your brother. The photos were inspiring. I am so sorry for your loss, but your memories will be with you for ever.

Cathie Bullis
At 11:37am on February 6, 2009, Toalson Family said…

I found you when I was looking for information about hospital beds and mattresses as my son is having a lot of difficulty sleeping. I have already requested information from the mattress company as you said Frankie did quite well with the mattress he used.

I am so sorry that Frankie passed away. I loved looking at all your pictures and it appears that he was able to enjoy a wonderful life. How wonderful of you and your sister to take such good care of Frankie. It brings tears to my eyes. Thanks for continuing to be involved in the PPMD community to help others of us who need advice on helping our sons deal with this disease.
At 3:31am on January 16, 2009, Debbie Freeman said…
Thanks danielle would love too. im so sorry for your loss, but as i read and see the best life you gave Frankie ! the laughter , smiles and love.
At 12:21pm on January 8, 2009, Tracy said…
You are such an inspiration! What a great life you gave Frankie (I watched your video)!!! I hope I can give my son things to smile about. My brother had DMD and died when he was 17. I was a terrible sister, very selfish. OH how I would do things differently......

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