<div><strong>Jonatan.</strong>
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<div>He was only 12 years of age when we started his GFM fundraiser. He turned 16 last October. Interested in Pirates of the Caribbean, Star Wars, Lego, Marvel and DC universes, karate and arts. Active, imaginative, sensitive. An old soul type of a lad.
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<div>For several years, as parents, we have been struggling to understand why he has been so ‘wobbly and clumsy’ in comparison to his peers. We have tried to find causes for his difficulties in walking, running, maintaining balance and posture, poor hand coordination and fine motor skills problems. We tried physiotherapy, occupational therapy, exercising routines at home; looked for tumours in his brain; investigated red circles under his eyes, believing they were allergy related; worked to improve the clarity of his slurred speech and prevent excessive drooling. It all seems to have borne fruit, but he kept deteriorating, nonetheless.
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<div>After years of searching for explanations, we finally received a diagnosis.
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<div>He has been diagnosed with a very rare genetic disorder known as <strong>Ataxia Telangiectasia (AT)</strong>.
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<div>Simply put, he has a broken/mutated gene (ATM gene) that affects the functioning of his cerebellum (the part of the brain responsible for coordinating movement). It also plays a significant role in the proper functioning of the nervous and immune systems.
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<div>The ATM gene is involved in the production of ATM protein. The mutation to the ATM gene drastically affects the functioning of that protein. The cells of the cerebellum are particularly susceptible to the loss of the ATM protein resulting in ataxia: balance disorder, walking/running difficulties, and hand-and-eye coordination issues.
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<div>The unknown origin of the red circles around his eyes has been identified as well. They are called telangiectases and are small clusters of enlarged blood vessels which are also very characteristic of AT.
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<div>Hence, the name: Ataxia Telangiectasia (AT).
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<div>As with many genetic disorders, there is no cure for AT. Physical and speech therapy are used to maintain the body's functioning and help with communication, accompanied by high-dose vitamin supplements to support the immune and nervous systems. Yet, as it is a progressive disorder, the likelihood of wheelchair assistance with movement by adolescence is very high and the life expectancy is virtually unknown due to the lack of conclusive research.
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<div>So, we have decided to seek help worldwide to maximise his chances against the odds.
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<div>Currently, there are four centres in the world specialising in AT. The closest ones to Ireland are in Nottingham, England and Frankfurt, Germany. We very much want Jonatan to be seen there. We would also like to avail of more physio, occupational and speech therapies, as 45 minutes every second week is not enough.
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<div>We are looking for donations for Jonatan to be included in international research and trial studies, which are the best opportunity for developing treatments and a chance for him to have the best independent life possible.
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<div><strong>Thank you for being so helpful.</strong>
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<div>A more scientific explanation of AT can be found here:
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<div><a href="https://en.wikipedia.org/wiki/Ataxia%252525252525E2%25252525252580%25252525252593telangiectasia" target="_blank" rel="noreferrer noopener">Wikipedia</a>
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<div><a href="https://medlineplus.gov/genetics/condition/ataxia-telangiectasia/" target="_blank" rel="noreferrer noopener">National Library of Medicine</a>
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</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/64994749_165126580379469_r." width="100%" />
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Rosemary Murphy

Tadhg Dineen

Anonymous

Tim Walters

James Sweeney

Roumaissa Slami

Izzy Kamikaze

Pat Murphy

Ronan Hennessy

Nuala O'Brien

thomas lynam

Martina Morrow

Frank Rooney

Rachel Deckard

Manuela Mazel

Happy Life Against All Odds

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

fundCurrencyCode

US + Non-charity COs Only

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fund country is US and user language is English

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

Streaming widgets beta user

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

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Money Box Donation List Prompt Experiment Audience

GoFundMe Employees

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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

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deleted_not_hidden_for_co_per_fundid_prod

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Payment method type group to be vaulted on success

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UKCharities

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route.pathname community

US Donation Upsell audience 

Auto Thanks Feature Audience

Supporter Comments Eligible Funds

International Only

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

ai_title_page

anyword

openai

control

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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

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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

Happy Life Against All Odds

Still €2,604 to go. Help us build momentum.