07/09/2025
Today is Duchenne Awareness Day which also means tomorrow is 3 years since Riley was diagnosed with this horrible condition!
Awareness of this condition is vital, we had never heard of it and it seems that’s a lot of healthcare professionals are also not as aware and educated in this condition as they should be! In the many many many GP appointments and post surgery check ups, no one even thought of Duchenne and we were constantly fobbed off, given video call Physio appointments (make that make sense) and constantly told about COVID delays!
If a doctor, nurse, physio had had more awareness of this condition he may have been diagnosed earlier and have stayed on his feet longer!
This I why more people need to know the signs and symptoms of Duchenne so that question “Could it be Duchenne?” Can be asked! Because Education and Knowledge is power.
But all that being said I am so proud of the strong, resilient, brave young man is becoming. Times get very hard and know one understand the real physical and emotional demands that come with having a severely disabled child unless you live it!
We will fight forever for Riley to lead the best, happiest life he can!
❤️❤️❤️💚💚💚
