<div>Help Our Sweet Bleu Fight X-Linked Adrenoleukodystrophy (ALD)
</div>
<div><br />
</div>
<div>Back in December 2025, our sweet son, Bleu, was diagnosed with X-linked adrenoleukodystrophy (ALD) after a heartbreaking decline during his first-grade year. Before that, we had never even heard of this rare disease.
</div>
<div><br />
</div>
<div>When Bleu was born, newborn screening for ALD was not yet available in New Jersey. Because of that, his disease wasn’t detected before symptoms began. If it had been caught through newborn screening, he may have had the opportunity for treatment before irreversible damage occurred. That is something we will always wonder about.
</div>
<div><br />
</div>
<div>Many people ask if this disease runs in our family. As far as we know, there is no family history of ALD, and nothing was knowingly passed down to Bleu. His diagnosis came as a complete shock and changed our lives forever.
</div>
<div><br />
</div>
<div>What is ALD?
</div>
<div><br />
</div>
<div>X-linked adrenoleukodystrophy (ALD) is a rare genetic disease that affects the brain, spinal cord, and adrenal glands. It prevents the body from properly breaking down certain fats, causing them to build up and damage the protective covering of nerve cells (myelin). As the disease progresses, children can lose the ability to walk, talk, see, hear, swallow, and communicate. It can also cause adrenal insufficiency, which can become life-threatening without treatment. While there are treatment options for some children if the disease is caught very early, there is currently no cure once significant brain damage has occurred.
</div>
<div><br />
</div>
<div>Bleu’s journey has happened so quickly.
</div>
<div><br />
</div>
<div>December 2025 – Bleu was diagnosed with X-linked adrenoleukodystrophy after months of unexplained changes.
</div>
<div><br />
</div>
<div>January 2026 – He had his first seizure.
</div>
<div><br />
</div>
<div>February 2026 – We worked to stabilize his adrenal insufficiency and cortisol levels. Around this time, he also began walking into walls and objects as his vision became affected.
</div>
<div><br />
</div>
<div>March 2026 – Bleu lost his voice. Hearing him speak for the last time is a memory we will carry with us forever.
</div>
<div><br />
</div>
<div>April–May 2026 – Swallowing became increasingly difficult. After an 11-day hospital stay, Bleu underwent surgery to have a G-tube placed because he could no longer eat safely on his own.
</div>
<div><br />
</div>
<div>June 2026 – Walking became much harder. He could only take two or three supported steps.
</div>
<div><br />
</div>
<div>Today – Bleu has lost the ability to walk, talk, and eat on his own. He receives all of his nutrition through his G-tube and requires around-the-clock care.
</div>
<div><br />
</div>
<div>Even though this disease has taken so much from him, it has never taken away who Bleu is.
</div>
<div><br />
</div>
<div>Bleu is the sweetest little boy with the biggest heart and the brightest smile. He loves being surrounded by the people who love him. He loves music, cuddles, lots of kisses and simply being with his family. One of his favorite things is to stand, so every day we help him stand several times because it brings him so much joy. Seeing him smile while standing reminds us that, despite everything, he is still our happy little boy.
</div>
<div><br />
</div>
<div>Right now, Bleu is stable, and we thank God for every single day we have with him. Our goal is to keep him comfortable, safe, and surrounded by love while giving him the best quality of life possible.
</div>
<div><br />
</div>
<div>We are raising funds to help provide Bleu with:
</div>
<div><br />
</div>
<div>* Specialized medical equipment
</div>
<div>* Adaptive devices that help him stand and participate in daily life
</div>
<div>* Home modifications and accessibility needs
</div>
<div>* Medical supplies and therapies
</div>
<div>* Travel expenses for appointments at CHOP and other specialists
</div>
<div>* Activities and experiences that allow him to enjoy life at home and in our backyard with the people who love him most
</div>
<div><br />
</div>
<div>No parent is ever prepared to watch their child lose abilities one by one. While we cannot stop this disease, we can make every day count. Every donation, every share, and every prayer helps us continue giving Bleu the love, comfort, and care he deserves.
</div>
<div><br />
</div>
<div>From the bottom of our hearts, thank you for taking the time to read Bleu’s story. Thank you for your kindness, your support, and for helping us make every moment with our beautiful boy as meaningful as possible.
</div>
<div><br />
</div>
<div>With love and gratitude,
</div>
<div><br />
</div>
<div>Bleu’s Family 
</div>

Cindy Delaney

Natalie Cunningham

Jacqueline Fugatt

Angela Russo

Bjonda Bilali

Bri Dorso

Mariam MacNeill

Ashley Marion

Michael Chagrin

Tianna Meyer

Dallas Grandma Woodward

Dallas Woodward

Erin Caffrey

Caitlin Morris

Mia Mara

Terry Wiener

Gillian Bolden

Liberti Griffith

Anna Sindac

Support Bleu in His Fight Against ALD

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; 

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

currencyCode

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

writePath

Stream Notification

start gfm intl allowed locales

Platform is iOS v11.2.0 and above

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

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

Influencer - Prod

US fundraisers and US users

Native 11.4.0 and higher

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

isCampaignOwner

fundHasInstagramDeepLink

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

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

userCurrencyCode

Localized Currency

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 Bleu in His Fight Against ALD

Still $16,122 to go. Help us build momentum.