<div>There is no 'normal' way to share the devastating news that the De Leonibus family has received and for most, like us, its unexpected and unfathomable. Steve, Marina, and the kids were relocated to Marine Corps Base Hawaii on the island of Oahu two months ago as part of his active duty with the United States Navy. Shortly after the move is when Ben started to show signs of agitation and physical/mental development issues. The initial diagnosis last month after their hospital visit was severe reflux at which point Ben was put on an NG tube and discharged a week later. Over the last two weeks, Ben has significantly declined in other ways, showing signs of neurological impairment which worsen as new symptoms develop daily.
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<div>After being readmitted over Labor Day weekend, the medical teams conducted multiple tests, scans, and procedures. It’s with the most immense pain and heartbreak that we inform you of his diagnoses of leukodystrophy, a rare progressive, metabolic, genetic disease (most likely Krabbe) a terminal disease that affects the brain. Ben’s diagnosis is gut wrenching and every parent’s worst nightmare. It is the worst possible outcome imaginable. At this time, we ask that you please pray for our sweet, innocent baby boy, Ben and that God is going to grant him the ultimate peace, and his family is given the support, care, and love they need to heal during this unfair time.
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<div>Our main goal is to get the family back to Maryland by Mid-September to spend Ben’s remaining weeks or months of life under the love and care of both Steve and Marina’s families. Being in Maryland will not only give them the support they need during this time, but also allow access to the best Pediatric Neurological programs in the country that can keep Ben comfortable. We are grateful for those who have been able to provide the guidance and connections to help facilitate the things needed that are helpful to navigate Ben and the family forward.
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<div>The money generated here will go towards many expenses including specialized flights and coordination back to Maryland, housing, medical, and other unexpected costs they will likely face during this time.
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<div>Please pray for Ben, Marina, Steve, Grace, Mia and the rest of the De Leonibus/Rubbo family as they begin to navigate their way through this. It will not be easy but there is reassurance in knowing the army standing behind him. We have already seen what that is, and we know it will only continue, to which we are all grateful.
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<div>‘Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more' Revelation 21:1
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Anonymous

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Lori Singer

Katherine Huseman

Be there for Ben

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

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NextDoor Share Option Users

Fundraisers with Reactions feature capability

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fund country is US and user language is English

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Enhanced Story Experience Users

Suggested Goal Experience Users

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

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GoFundMe Employees

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Mark Rieth IP Address

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Fund is in English speaking country

desktop

Android v12.11.0 and above

Platform is Android

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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

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fallback mode accounts

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p2p legacy startfundraising page

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AMP24 New Funds Only PROD (DO NOT MODIFY)

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charityId

UKCharities

Federated Search Internal Testing

route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

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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

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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

Logged In Users

CH Donation Upsell audience

Android v10.6.0 and above

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Localized Currency

v11.5.0 and above

testAudience

pathname

Survicate

appVersion is at or above 12.8.0

Non-charity fund

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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

Be there for Ben

Still $3,155 to go. Help us build momentum.