The DMD Life Of Riley

The DMD Life Of Riley Riley is living with Duchenne Muscular Dystrophy. Join us for the highs and lows and all in between!

22/01/2026

When Riley was diagnosed with DMD about 3 1/2 years ago, we lived in a tiny 2 bed house that was not just not suitable for Riley’s needs it was dangerous! We were added to the list for a council house, with the housing crisis in Cornwall we didn’t know if we would ever find something suitable. A year later we were given notice from our landlord that we needed to leave as the were selling our house and we were devastated. That same day (so strange) we had the phone call that changed our lives, we had been offered a 3 bedroom council house that could be fully adapted to meet Riley’s needs!
We moved in in January 2024 and had many a meeting, phonecall, assessment and conversation about the adaptions! We were made to wait for almost 2 years for work to start but it is now finally finished and this house is Riley’s forever home and we can’t be more grateful for our beautiful adapted home that our children can grow up in, make memories in, be safe in and be happy in!! ❤️❤️❤️❤️

Today is Duchenne Awareness Day which also means tomorrow is 3 years since Riley was diagnosed with this horrible condit...
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!

❤️❤️❤️💚💚💚

Last week we went to The Camborne Community Awards where Riley was nominated for Fundraising Hero after his Rugby 4 Rile...
01/08/2025

Last week we went to The Camborne Community Awards where Riley was nominated for Fundraising Hero after his Rugby 4 Riley event raised £5000 for DMD Charities 💚💚

He was over the moon to win the catergory and come home with a Trophy and Certificate!

Keep doing what you doing my little superstar ⭐️⭐️

April/May/June/July Photo Dump!!It’s been a busy few months but better late than never 😂😂1. Enjoying the Rides at Trevit...
01/08/2025

April/May/June/July Photo Dump!!

It’s been a busy few months but better late than never 😂😂

1. Enjoying the Rides at Trevithick Day
2. Rugby 4 Riley Event
3. Cheesy grins on our Weekend Trip to Haven
4. Loving the 2p machines in the Arcade
5. The Seaside Squad at Haven
6. Crazy Golf with Daddy
7. Sunday Family Walks
8. Enjoying a Wheelchair Sports Day at School
9. After the School Rainbow Run
10. Winning his Camborne Community Award

💚 Final Total 💚So the Just Giving Page for Rugby for Riley, The Finale Closes in 7 Days! This is the the money from your...
27/07/2025

💚 Final Total 💚

So the Just Giving Page for Rugby for Riley, The Finale Closes in 7 Days!
This is the the money from your ticket sales, pre bought raffle and auction money and any extra fundraising done through individual fundraising events prior to the day!

And the Grand Total is …….. (Drum Roll Please) ………

£5023.63!!!!!!!!

All of this Money will go directly to Duchenne Uk to support their vital work for the DMD Community!

Today we met with Matt Begley who has been a massive Supporter of the Rugby for Riley Events at Redruth RFC for a photo with our big Cheque!

As always Thankyou for all your support forever and always!

💚💚💚💚💚💚💚💚

Big Thanks to the 46 Crew for their amazing fundraising support from their recent Run for Riley! £325 raised and going s...
10/04/2025

Big Thanks to the 46 Crew for their amazing fundraising support from their recent Run for Riley!

£325 raised and going straight to Duchenne Uk to support their amazing work.

Well done and Thankyou for the support.

🏍️🏍️🏍️

February/March Photo Dump! Not too much to share, it’s been a long term and we have been counting down to the Easter Hol...
09/04/2025

February/March Photo Dump!

Not too much to share, it’s been a long term and we have been counting down to the Easter Holidays for some recovery!

1. Cinema Date with Mummy to watch DogMan
2. Getting out and about and much more confident in the Powerchair
3. Enjoying some nicer weather with a Ice Cream
4. Poppy and Riley stealing Mummy’s Bed
5. A happy smiley Riley just because

Riley’s Little Sister Poppy 💗“Look Mummy, I am like Riley” Proud as punch moving around in Riley’s wheelchair. Poppy wil...
22/02/2025

Riley’s Little Sister Poppy 💗

“Look Mummy, I am like Riley”
Proud as punch moving around in Riley’s wheelchair.
Poppy will grow up so accepting of disability and I believe it will make her a better person. (Some people should take a leaf out of her book).

Riley’s wheelchair is “normal” to Poppy and she doesn’t remember a time when Riley walked. She is beginning to ask questions and it’s really important we tell both of them about his condition without the scary bit.

Growing up as a disability sibling is also going to be hard but I know she will be Riley’s biggest supporter forever ❤️❤️

🦽🦽🦽🦽

January Riley Photo Dump!Riley upgraded to a Power ChairSeeing in the New YearPromoting Rugby4Riley The FinaleOur Star P...
03/02/2025

January Riley Photo Dump!

Riley upgraded to a Power Chair
Seeing in the New Year
Promoting Rugby4Riley The Finale
Our Star Performer at school

Rugby 4 Riley The Finale So we are going again in May, another event raising vital funds for Duchenne Uk and Riley’s dre...
03/02/2025

Rugby 4 Riley The Finale

So we are going again in May, another event raising vital funds for Duchenne Uk and Riley’s dreams.

We will be taking a break after this event but this won’t be a last time your will be hearing from us.

Scan the QR code or click the link below to buy tickets, Remember to put you name or contact Scott Lake or this page so we can send you your physical ticket. Your money will go directly to Duchenne UK.

As always thanks for all your support.

😘😘💚💚

https://www.justgiving.com/page/scott-lake-1729238579813?utm_medium=FR&utm_source=CL

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