<div><br />
</div>
<div>Esmay’s fight against Sanfilippo Syndrome-Mucopolysaccharidosis IIIA
</div>
<div>• Esmay was diagnosed with Sanfilippo Syndrome IllA on 15th May 2025
</div>
<div>Esmay has experienced a lengthy medical history in her short life being diagnosed with over active thyroid auto immune disease at age 3 followed by autism, with love, persistence and hope, we have pushed until we received a final diagnosis that explained everything.
</div>
<div>Sanfilippo Syndrome is a form of lysosomal storage diseases related to the Mucopolysaccharidosis family.
</div>
<div>It is a genetically inherited and degenerative disease.
</div>
<div>It is a rare disease that most have never heard of. On average, depending on the type (A, B, C, or D), there are 1 in 70,000 children diagnosed with this terminal illness. It is commonly referred to or compared to a childhood form of Alzheimer's.
</div>
<div>She will eventually lose her ability to talk, walk, feed herself, possibly lose her hearing and experience seizures. SF IllA is the most rapidly progressing (severe) form of this disease and there is no cure. It is fatal.
</div>
<div>Most children with Sanfilippo Syndrome do not live past their 10th birthday. Our biggest fear aside from losing her at such a young age, is watching her suffer.
</div>
<div>To see your innocent child/Grandchild consistently continue to lose skills and abilities they once had is heart breaking. Having no way to intervene or stop the suffering is even worse.
</div>
<div>This page was formed to help raise awareness for Esmay and other children like her and raise money to help her have the best life we can give her.
</div>
<div>We are all fighting a battle others may never understand. Be kind to each other and be thankful for even the most minimal of positives in your life.
</div>
<div>With your help we can get Esmay all the things she will need to support her and make the remaining of her life as comfortable as possible. She will need special car seats , bath/shower chair, padded zip up cot/bed and a reclining disabled special buggy plus many more things
</div>
<div>we want to make sure she doesn’t suffer and has everything she needs to be as comfortable as possible.
</div>
<div>I have watched my beautiful granddaughter rapidly decline over the last few years which is heartbreaking, Esmay is only 5 years old. I would give anything to hear her talk , laugh or even smile again , to know that I will never hear her speak again is so hard to accept.
</div>
<div>Every parent dreams about their child's future and watching it unfold. Sanfilippo Syndrome takes that all away. Sanfilippo Syndrome is a rare, terminal, neurodegenerative disease that causes children to lose all the skills they've
</div>
<div>gained, suffer seizures and movement disorders, experience pain and suffering, and then die. All before their parents/grandparents eyes.
</div>
<div>if you can help at all we would appreciate it so much.
</div>
<div>thank you.
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749057485412333_r.png" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749057470789103_r.png" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749057455102190_r.png" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749058573773899_r.png" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749058615834172_r.png" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749060346618521_r.jpeg" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749060365865972_r.jpeg" width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/91572139_1749081304169744_r.jpeg" width="100%" />
<div><br />
</div>

Debbie McGovern

Anonymous

Lee Shelton

Annelie Carver

tommy williamson

Nicola Bartlett

Mrs Nicola M Dyer

Ines Pfister

Lee Short

Patsy Browring

Tina Tina BennettBennett

Wendy Wilshaw

Maureen BEAUCHAMP

jade lee edwards

Kim Reynolds

Jacqueline Humphries

Kerri Thomson

Chloe-louise Totterdell

Abi W

Support for Esmay  living with Sanfilippo syndrome

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)

countryCode

charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

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

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

Users Receiving Braze KYC Validation Failed

Native 11.3.0 and above

ai_title_page

anyword

openai

control

manual_entry

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

categoryGroup

isCampaignOwner

fundHasInstagramDeepLink

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

Support for Esmay living with Sanfilippo syndrome

Noch £2,986. Hilf uns, Dynamik aufzubauen.