<div>Our beautiful little Leni, who is just two years old and so full of love and life, has been diagnosed with an extremely rare and very severe rapidly neurodegenerative genetic condition called <strong>Sanfilippo Syndrome Type B (MPSIIIB)</strong>, also known as<strong> Childhood Dementia</strong>. Life-saving treatment may be available this year, but we need to urgently raise funds for her to access this. With Leni’s condition every day matters and <strong>time</strong> <strong>is</strong> <strong>running</strong> <strong>out</strong> <strong>to</strong> <strong>save</strong> <strong>her</strong> <strong>life</strong>.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769002230529382_r.jpeg" width="100%" />
<div><br />
</div>
<div>Children with this condition have a defect in a single gene that prevents them from breaking down a sugar molecule called heparan sulfate, causing toxic waste to build up in the brain and body.
</div>
<div><br />
</div><iframe media_type="0" media_id="YNNjvmcIMls" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/YNNjvmcIMls/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
<div><br />
</div>
<div><strong>Sanfilippo</strong> <strong>Syndrome</strong> <strong>is</strong> <strong>unimaginably</strong> <strong>cruel</strong>. Children develop relatively ‘normally’ with no obvious symptoms until they are around two years old, then over a short amount of time they lose all skills once learned, experience severe behavioural challenges, extreme hyperactivity, insomnia that can last for days, seizures, a total loss of cognitive and motor function, and a premature death in their early to mid teens, as well as many other horrific symptoms. <strong>Sanfilippo is relentless and leaves nothing untouched</strong>.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769027659693907_r.jpeg" width="100%" />
<div><br />
</div>
<div><strong>Leni will lose the ability to walk, talk, play, laugh, eat, and eventually her life to this condition.</strong>
</div>
<div><br />
</div>
<div>Some of our wonderful friends are completing gruelling challenges to help raise the funds and awareness needed to prevent this from happening. Every donation and share is another step closer to life-saving treatment for Leni:
</div>
<div><br />
</div>
<ul>
<li><strong><a href="https://www.gofundme.com/f/running-100km-to-save-leni" target="_blank" rel="noreferrer noopener">100km4Leni</a> - Thames Path Challenge by Michael</strong>
</li>
<li><strong><a href="https://gofund.me/e0f214a16" target="_blank" rel="noreferrer noopener">3Peaks4Leni</a> - The 3 Peaks Challenge by Becky</strong>
</li>
</ul>
<div><br />
</div>
<div>Like most of the world, we had never heard of Sanfilippo Syndrome until very recently, and it is now part of every waking moment and has <strong>ripped our</strong> <strong>world apart</strong>. No parent should have to go through this heartbreak, and no child should have to suffer with this syndrome.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769000414210945_r.jpeg" width="100%" />
<div><br />
</div>
<div><strong>There is currently</strong> <strong>no treatment and no cure</strong>, but since launching Leni’s campaign there are now multiple promising <strong>experimental treatments on the very near horizon</strong> that have already been proven to be incredibly effective and everyone is working very hard to make these treatments urgently accessible to those who need it.
</div>
<div><br />
</div>
<div><strong>We will do whatever we can to get Leni and other children access to the treatment that they desperately need, but at the moment it is <em>just</em> out of reach - partly due to lack of funding.</strong>
</div>
<div><br />
</div><iframe media_type="0" media_id="2B_mDtRi_gU" class="youtube-replace" title="YouTube video player" style="margin-bottom:20px;width:560px;height:315px;" src="//www.youtube.com/embed/2B_mDtRi_gU/?rel=0" frameborder="0" allowfullscreen="1"></iframe>
<div><br />
</div>
<div>With Leni’s condition weeks and months matter as <strong>toxic waste builds up in her tiny body every single day</strong> and the damage cannot be reversed once it is done. Time is working against us. The difference between her getting access to this treatment now and in a years time could be the difference between a potentially near-normal life and a significantly shortened life with the most severe mental and physical disabilities you can imagine. <strong>It’s</strong> <strong>now</strong> <strong>or</strong> <strong>never</strong> <strong>for</strong> <strong>Leni</strong>.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769000484717766_r.jpeg" width="100%" />
<div><br />
</div>
<div><strong>It</strong> <strong>is every parent’s worst nightmare to be told that their child is going to die after years of suffering</strong>, and that is the haunting reality we are faced with if Leni cannot get access to treatment and fast. We will do anything we can to save our baby girl, and that starts with raising awareness and funds to get her access to life-saving treatment. <strong>This</strong> <strong>truly</strong> <strong>is</strong> <strong>her</strong> <strong>only</strong> <strong>hope</strong>.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769032673669850_r.jpeg" width="100%" />
<div><br />
</div>
<div><strong>We know that the best chance of us getting Leni and other children access to this treatment is by campaigning and fundraising</strong>, but the exact pathway is unclear.
</div>
<div><br />
</div>
<div>We are engaged with all involved parties from around the world and will update you all as soon as we know more.
</div>
<div><br />
</div>
<div>If we are unsuccessful in accessing these specific treatments then funds will go towards any future treatments that may become available, to providing for her complex medical needs, and to improving her quality of life wherever we can. We will also donate funds to <strong>Great Ormond Street Hospital </strong>who are providing Leni with truly world-class care, and the <strong>MPS Society</strong> &amp; <strong>Cure Sanfilippo Foundation</strong> who have been a huge support for us and many other children and families.
</div>
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/99103165_1769028057416566_r.jpeg" width="100%" />
<div><br />
</div>
<div>We will be sharing updates on Leni’s journey on her Instagram <strong><a href="https://www.instagram.com/saving_leni" target="_blank" rel="noreferrer noopener">@saving_leni</a></strong>, TikTok <strong><a href="https://www.tiktok.com/@saving.leni" target="_blank" rel="noreferrer noopener">@saving.leni</a></strong>, and here on her GoFundMe page.
</div>
<div><br />
</div>
<div>We have been completely overwhelmed by the love and support we have received since Leni’s diagnosis and we know that <strong>she is so loved</strong>.
</div>
<div><br />
</div>
<div><strong>Leni's story has received extensive coverage in the national press. We've shared some highlights below where you can learn more about her condition and her fight to access life-saving treatment:</strong>
</div>
<div><br />
</div>
<ul>
<li><a href="https://www.thetimes.com/life-style/parenting/article/childhood-dementia-experience-vhr880drt" target="_blank" rel="noreferrer noopener">The Times</a>
</li>
<li><a href="https://www.independent.co.uk/news/health/sanfilippo-childhood-dementia-leni-forrester-b2946332.html" target="_blank" rel="noreferrer noopener">Independent</a>
</li>
<li><a href="https://www.mirror.co.uk/news/uk-news/our-little-girl-2-dementia-36903755" target="_blank" rel="noreferrer noopener">The Mirror</a>
</li>
<li><a href="https://www.dailymail.com/health/article-15702695/Our-daughter-childhood-dementia-no-obvious-signs.html" target="_blank" rel="noreferrer noopener">Daily Mail</a>
</li>
<li><a href="https://people.com/2-year-old-girl-diagnosed-rare-childhood-dementia-11932006" target="_blank" rel="noreferrer noopener">People Magazine</a>
</li>
</ul>
<div><br />
</div>
<div>We know that it is a big ask, but please donate if you are able, and please share Leni’s story and GoFundMe page everywhere you can to help raise the awareness and funds needed to <strong>save Leni’s life</strong>.
</div>

Aine Ni Mhonachain

Anonymous

Emma Oliffe

Fiona Woodward

Kate Courtnell

Cristina Dragomir

Erin Brown

Elena Jaramillo

Josie Hibbert

Heather Topham

Lucy Richards

Nia Roberts

Amanda Brogaard Pedersen

Laura Charlton

Tracey Jones

Katherine Tiller

Leni’s Life-Saving Treatment

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

Leni’s Life-Saving Treatment

Still £73,873 to go. Help us build momentum.