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<div><strong>Remi’s Story</strong>
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<div>My beautiful daughter, Remi, is only 19 months old. At just 5 months, she was diagnosed with a rare genetic neurodevelopmental disorder called Dup15q Syndrome — a duplication of a section of her chromosome 15.
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<div>Dup15q Syndrome affects roughly 1 in 10,000 births annually worldwide and most cases occur de novo, meaning they are not inherited but happen spontaneously.
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<div>Because of this chromosomal duplication, Remi faces many challenges, including complex epilepsy, autism, global developmental delay, and severe hypotonia (low muscle tone) — along with new hurdles we continue to learn about every day.
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<div><strong>Epilepsy</strong>
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761648768607374_r." width="100%" />
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<div>Remi’s epilepsy first appeared at just 5 months old, when she began having infantile spasms — a devastating type of seizure common in babies with Dup15q.
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<div>Since then, she has trialed countless anti-epileptic drugs (AEDs), but none have managed to fully control her seizures, which have changed and worsened as she’s grown.
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<div>In February 2025, she began the Ketogenic Diet as an alternative treatment to help manage her epilepsy. While she still experiences hundreds of seizures a day, this diet has been the most effective so far in reducing the most aggressive types — the ones that are particularly harmful to her developing brain.
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<div><strong>Autism</strong>
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<div>Between 70–90% of children with Dup15q go on to meet the criteria for Autism Spectrum Disorder (ASD).
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<div>It’s likely that as Remi grows, her autistic traits will become more noticeable — but with early support and therapies, we’re determined to give her every opportunity to thrive in her own unique way.
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<div><strong>Hypotonia (Low Muscle Tone)</strong>
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761648862681491_r." width="100%" />
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<div>Remi’s hypotonia is very severe, making those precious milestones — like sitting, crawling, and walking — much harder to achieve.
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<div>She works tirelessly with her NHS physiotherapists to build strength and coordination, and we’re hopeful that soon she’ll reach the incredible milestone of sitting independently.
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<div><strong>Global Developmental Delay</strong>
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761649391697711_r." width="100%" />
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<div>Global Developmental Delay is another hallmark of Dup15q Syndrome. Alongside her gross motor delays (sitting, crawling, walking), her fine motor skills and communication abilities are also affected.
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<div>Simple things like babbling, feeding, and coordination are daily challenges for Remi — but she approaches everything with courage, resilience, and her beautiful smile.
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<div><strong>How You Can Help</strong>
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<div>On Sunday, 22nd March 2026, I’ll be running the Rome Marathon to raise funds and awareness for two special causes.
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<div><strong>For Remi</strong> - 50% of all donations will go directly towards funding private physiotherapy, hydrotherapy, and occupational therapy sessions. These therapies are life-changing for Remi — helping her build strength, gain independence, and reach milestones that many of us take for granted.
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<div><strong>For Epilepsy Society</strong> - The remaining 50% will be donated to the Epilepsy Society, in support of their incredible research, advocacy, and care for children, adults, and families living with epilepsy.
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<div>Every single donation, no matter how small, makes a huge impact.
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<div>From the bottom of my heart, thank you for taking the time to read Remi’s story — and for every single donation, share, or kind message.
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<div>Your support means the world to us and helps give Remi the best possible chance at a brighter, stronger future.
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Sam Ottley

Nikki Hayman

Nicole Gravatte

Jack Forrester

Deborah Anstey

Liam Buttery

Kieran Buckley

Thomas Hyland

Georgina Gower

Hugh Evans

Katie Pierpoint

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Liam Cannon

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Joanna Williams

Running Rome for Remi: My Dup15q Warrior

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