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In October 2024, just a few months before Roman’s third birthday, our world changed forever. Initially, his late walking and gross motor delays were attributed to post-pandemic developmental shifts or a focus on language, with health professionals offering reassurance that he would eventually catch up. However, persistent concerns and a private physiotherapy assessment led to a blood test that revealed elevated CK levels. Just ten days after genetic testing, we received the news we never expected: Roman has Duchenne Muscular Dystrophy (DMD).

What this means for Roman

DMD is a progressive, life-limiting muscle-wasting condition. Because Roman’s body doesn't produce a protein called dystrophin, his muscles don't have the "shock absorbers" they need. Over time, his muscle cells will become permanently damaged and weaken. This doesn't just affect his ability to walk and climb; eventually, it will impact his heart and his breathing.

Right now, we are facing the heart-wrenching reality of a condition with no cure—only impossible choices between treatments that carry profound side effects.

The "Gap" in Care

While the NHS is a lifeline, it cannot always provide the "perfect fit." For example, the standard wheelchair offered to Roman is too heavy for him to self-propel safely. To give him true independence, Roman needs a specialised, ultra-lightweight model. It is 7kg lighter—the difference between being pushed and moving himself—but it comes with a £5,000 price tag.

Why we are asking for your help

The wheelchair is just the beginning. The "hidden" costs of DMD are overwhelming. Eventually, we will have to leave our cherished family home because it cannot be adapted for Roman’s future needs. From specialised equipment and mobility aids to accessible transport, the financial burden is a mountain we cannot climb alone.

We have launched Rally for Roman to bridge the gap between the care Roman is offered and the specialised tools he actually needs to thrive.

Join our Rally

If you are able to donate, please know that your generosity goes directly toward the equipment and adaptations that will give Roman the best possible quality of life.

Please join us in helping Roman live a life defined by his potential, not his diagnosis.