<div><br />
</div>
<div><strong>Remi’s Story</strong>
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div><strong>Epilepsy</strong>
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761648768607374_r." width="100%" />
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div><strong>Autism</strong>
</div>
<div><br />
</div>
<div>Between 70–90% of children with Dup15q go on to meet the criteria for Autism Spectrum Disorder (ASD).
</div>
<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.
</div>
<div><br />
</div>
<div><strong>Hypotonia (Low Muscle Tone)</strong>
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761648862681491_r." width="100%" />
<div><br />
</div>
<div>Remi’s hypotonia is very severe, making those precious milestones — like sitting, crawling, and walking — much harder to achieve.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div><strong>Global Developmental Delay</strong>
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/96006687_1761649391697711_r." width="100%" />
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div>Simple things like babbling, feeding, and coordination are daily challenges for Remi — but she approaches everything with courage, resilience, and her beautiful smile.
</div>
<div><br />
</div>
<div><strong>How You Can Help</strong>
</div>
<div><br />
</div>
<div>On Sunday, 22nd March 2026, I’ll be running the Rome Marathon to raise funds and awareness for two special causes.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div>Every single donation, no matter how small, makes a huge impact.
</div>
<div><br />
</div>
<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.
</div>
<div><br />
</div>
<div>Your support means the world to us and helps give Remi the best possible chance at a brighter, stronger future.
</div>

Nikki Hayman

Nicole Gravatte

Jack Forrester

Deborah Anstey

Liam Buttery

Kieran Buckley

Thomas Hyland

Georgina Gower

Hugh Evans

Katie Pierpoint

Claire Parkes

uyi osagie

Daniel Parry

Anonymous

Liam Cannon

Harry Taylor

Phoebe Bridges

Lee Southall

Joanna Williams

Nathen Wilkinson

Running Rome for Remi: My Dup15q Warrior

platform

Platform is iOS

Android

Adyen Google Pay Development Audience

$opt_dummy_attribute

English only

Deprecate Stripe Legacy

dyn_template_ids

Adyen V6 Bene Transfer & MyMoney Campaign Organizers - test01

Bene transfer V6 and AdyenV6MyMoney Campaign Organizers - production

OneTrust next-app audience

fundCountryCode

NextDoor Share Option Users

Fundraisers with Reactions feature capability

fundCurrencyCode

US + Non-charity COs Only

locale

fund country is US and user language is English

personId

comms-internal-person-ids

Enhanced Story Experience Users

Suggested Goal Experience Users

user language is English and fund country: US, AU, DK, FI, IE, NO, SE, CA, GB; 

Poster share - new funds eligible (newest 9/18)

Streaming widgets beta user

paymentProcessor

3DS payment method

user language is English and fundCountry: US, AU, DK, FI, IE, NO, SE, CA, GB; 

currencyCode

Money Box Donation List Prompt Experiment Audience

GoFundMe Employees

ipAddress

Mark Rieth IP Address

Version 9.2.0 and above

Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

paymentMethodType

checkoutType

Payment method type group to be vaulted on success

admin pr kit prod

EUR Donation Upsell

Share Text generation Skip Fundraiser

(prod) new funds eligible for amp12 (UGC gallery)

fintrac_cad_idv_form_v2 audience

paymentProcessorAccountId

fallback mode accounts

proCampaignId

p2p legacy startfundraising page

AMP24 New Funds Only PROD (DO NOT MODIFY)

Eligible for Profile Share Badge

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

International Only

fundId

braze fundraiser group 

Payment Identity Transfers ATO Risk Check (Targeted) - Production

Fundraiser Saved Payment Method Rate Limit Bypass (Production)

leaderboard-partner-id-audience-givepanel

Version 9.2.1 and above

AUD Donation Upsell audience

fundraiserCountryCode is US/EN

Active Fundraiser - Smart Default Cadence

DAF Internal

Vault on success card payment method

Platform is iOS v11.0.0 and above

Desktop users

Person ids

United States (US) users

allow yuno fundraisers for test

Mexico country code

Posters INTL

Support Comments Allowlist

NPO Profile Opted-In

iOS at or above 12.4.0

non-US recurring donors

Canada Campaign Owner Group

Fundraiser Without Meta Link

Scheduler payment tester gorup

charityCommunityId

Charities allow to be claimed unclaimed (PRD)

Canada (CA) users

UC Tipping v20250115 International

pymk_production_xplr_fe_team

Android at or above 12.2.0

Profile photo entry point audience

smart goals (fundraiser/manage) on test01

Activity Tracking v1 Beta Testing

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

NPO upsell education category

unclaimed charities

prod_ach_audience

AI Chatbot Audience

amp13 only new funds (prod) (anyword auto)

UC Flow Enabled (Prod)

Payment Identity Beneficiary Verification - Production

shared notification bell audience

Custom users

ach frontend audience

Android v11.0.0 and above

Users Receiving Payments Paused Notifications

smart goals test01

Manage Coach - US English Organizers Only + new funds only

Team EGG - IP Address list

NPO recommendations prod

Fundraiser Without Instagram Deep Link

Native 11.4.0 and above

UC Tipping v20250107

checkout headers audience

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

isEligibleForProfileBadge

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

Native 11.3.0 and above

Native 11.4.0 and higher

New funds eligible - Video Sharing (PROD)

GB Donation Upsell audience 

Auto Thanks V3 Rollout Audience

Thank you V3 testing whitelist

isRecurringFriendly

Is Recurring Friendly

Excluded funds - Video Sharing

NPO upsell animals category

NPO upsell disaster relief category

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

NPO upsell essential needs category

NPO upsell medical category

userCurrencyCode

Localized Currency

NPO upsell cancer category

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

isChallengeFundraiser

challenge-fundraisers

Payment Identity Launch Verification - Production

New funds eligible - Posters v2

CAD Donation Upsell Audience

Braze Email Tester

NPO Profile Opted-Out

iOS App Version

hasKnownDonors

PYMK has donors

iOS v12.3.0 and above

Enter your donation forRunning Rome for Remi: My Dup15q Warrior