Skip to content
Unknown's avatar

The Life of Riley's

Our journey with Friedreichs Ataxia

  • Home
  • Contact

Tag: cardiomyopathy

1 step back, and 6 swims forward…

T has had swimming lessons on and off for a few years now. Its has never been an easy journey for him in the water, and has quite frequently left him frustrated and disheartened. As he's got older, finding swimming aids that don't look as if they are designed for a 5 year old has … Continue reading 1 step back, and 6 swims forward… →

lifeofrileysfa Uncategorized 3 Comments October 13, 2018October 13, 2018 3 Minutes

Reports, appeals and ‘Being 9’.

Following the advice of our medical team, we recently spent a considerable amount of time filling out forms to apply for some additional support for T; and to help us to continue to make adaptations to our house/general every day life. The forms were incredibly personal and very hard to complete. Now when I say … Continue reading Reports, appeals and ‘Being 9’. →

lifeofrileysfa Uncategorized Leave a comment October 9, 2018October 10, 2018 3 Minutes

Black Thursday.

This week has seen T have his first major emotional reaction to his medical conditions. As a family, we have had many emotional responses to the ever unfolding events, however, this has been the first time it seems to have significantly hit T. And hit him it did. Like a HGV. We were getting ready … Continue reading Black Thursday. →

lifeofrileysfa Uncategorized 2 Comments September 30, 2018September 30, 2018 6 Minutes

The boy with the big heart.

Today was our check up with T's cardiologist. Every appointment we go to now starts with the same questions from young Mr T: "Do I have to have any tests?" "Which Dr are we seeing today?" "Will it be the electric shock test again?" The past year has been particularly tough for our dude. He's … Continue reading The boy with the big heart. →

lifeofrileysfa Uncategorized 2 Comments September 26, 2018 3 Minutes

Posts navigation

Newer posts
Blog at WordPress.com.
  • Subscribe Subscribed
    • The Life of Riley's
    • Join 59 other subscribers
    • Already have a WordPress.com account? Log in now.
    • The Life of Riley's
    • Subscribe Subscribed
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...