Tom's Story - Duchenne muscular dystrophy - Action Medical Research

www.action.org.uk/appeal/duche...
Tom has Duchenne muscular dystrophy, a rare and fatal condition that causes muscle weakness, and a relentless deterioration in physical abilities. Although there is currently no cure, treatments can help. Action Medical Research is funding research which aims to develop a new treatment that could increase muscle strength and slow down disease progression to help give boys like Tom a better brighter outlook. With your support we can reach the next breakthrough and help children like Tom.
/ actionmedres
/ actionmedres

[@DerektheFan1]

My friends son has Duchenne. Since then we have been trying to raise awareness and support. Ive helped Action Duchenne but I am fully behind any charity that is trying to find a cure for this disease. I hope and pray that
one day soon a cure will be found.Derek

[@jug7bunchy119]

I donated most of my money for thoes kind of treatments

[@AdvancellsThePowertoCure]

Watch Muscular Dystrophy PATIENT TREATMENT (Testimonial). For More detail contact us at [phone] & Email us at [e-mail]
czcams.com/video/Zer-duSRlYY/video.html

[@dayvgray]

A very moving story which puts all of out lives into perspective.

[@christophermcewan-np1qs]

I could see that the lady was trying to be a good mom. That means a lot for the young boy!

[@jonchristakos2188]

God Bless Tom.

[@madrush24]

We've come far in 8 years. I feel lucky to be alive in this day and age where medical treatments are improving every day. #sarepta

[@Loz60]

How is Tom today? The update video is from 2017?

[@trifawra2098]

My son now 8 years old has DMD. Am so sad.

[@SwimKam]

Does anyone know of an update on Tom and his loving family? Would be so nice to see how he and his adorable little sister and parents are doing. New therapies have been approved by the FDA which slow the progression of muscle damage and increase quality of life. Wondering if Tom is benefitting from these developments in research?

[@ActionMedicalResearch]

Thanks for your comment, we have an update on our website here www.action.org.uk/blog/2017/09/04/friend-life

[@zahidkhan-pn9dg]

Nice to see the kids.they r going big now.allah ll give good health

[@clint9701]

Hi. Hows tom going. I can only find an update from 2017..

[@jaysimoes3705]

SO so so sad. "This is 2015" and this warm woman says "it is tantalisingly close". We are in 2023 and we could still say the same thing. What was available or almost available in 2015 in the end had very little effect since the meds did not penetrate muscles well enough. So Sarepta is on the verge of getting its microdystrophin product on the market. It won't work in everyone (since it uses a virus some kids have antibodies to). I think this boy is now 15 years or so and probably went through all the phases she dreaded so much. He is probably wheelchair bound. But still there is a silverlining I hope and think: it won't be fatal for him, since that concerns heart and lungs and there are now quite a few drugs, especially SGT-102 which is also pretty close to come to market and I think it specifically targets those vital organs. I hope so. I hope he is still doing (relatively) well.

[@Space_Alpaca]

i have that and i no what it is like

[@nerelynvlog4251]

My son now 15yrs old DMD

[@rhonackimp]

Am really very sad, it's me and my son with Duchene 😢 and we ain't doing well.. we've never used any treatment.

[@lamea8021]

😭

[@kamranalikamranali1590]

I'm also muscular distrophy patient

[@vasanthadimani4985]

My son is Duchenn mascular distophy 😭😭

[@kantilalbhanushali3668]

Aru you from which country

[@balachandarsenthupandi]

Same

[@Space_Alpaca]

im 26

[@caitlynnguyen9520]

Couldn't they have prescribed him Prednisone?

[@ezra1162]

My 6 year old was just diagnosed with this 😭

[@ezra1162]

@@Robert-lm5rr ty ty ty

[@kantilalbhanushali3668]

How is he now

[@faisalbabu1680]

helo in not medicine....