<div>The Making of Loui Legend
</div>
<div><br />
</div>
<div>This campaign is for our baby, Loui Legend who made his shocking arrival into the world on the 8th February 2015 at 12:48am weighing 7lb14.5.
</div>
<div><br />
</div>
<div>Undiagnosed throughout the pregnancy, there had been a completely random mutation of a gene at conception which unfortunately caused Loui to be born with a condition called Treacher-Collins Syndrome. The chances of this are 1 in 50,000! For Loui's dad and I (Luke &amp; Karly), this was a massive shock and for a split second after the trauma of birth when Loui cried out, it was the most magical moment but this was soon to be snatched away from us as we realised something was wrong. At that point it seemed, our world came crashing down around us, we were crushed and heartbroken as Loui stopped breathing and they rushed him away to intensive care to be rescusitated before we had even had a chance to see or hold him.
</div>
<div><br />
</div>
<div>Treacher-Collins Syndrome is very cruel and affects the development of the bones and other tissues of the face. The signs and symptoms of this disorder vary greatly, ranging from almost unnoticeable to severe.
</div>
<div>Loui's case is unfortunately very severe so because of the small size of his chin he has had to have a tracheostomy in order to breathe. He has very deformed almost absent ears and no middle ear, so he has to wear a bone anchored hearing aid (BAHA) on a headband to be able to hear. He will have to wear this till the age of about 9 when his skull will be thick enough for the BAHA to be surgically fixed. As part of the syndrome he also has a cleft palate which makes it impossible for him to suck so he is fed through a naso-gastric feeding tube. Loui has downward slanting eyes as the bones of the eye sockets are so under-developed and he has very small cheekbones. He has a lifetime of hospital trips, procedures and operations yet most of the corrective surgery cannot be done until he is an adult and fully grown. Luckily Loui should be mentally and intellectually fine (although this is almost the cruellest aspect of the syndrome as he will be well aware of how he looks). Recently Loui had an appointment back up at Great Ormond Street Hospital where we were shocked again to find out his cleft palate is so severe that they've said it's irreparable so could affect his speech and being able to eat for the rest of his life! This is almost unheard of and the one operation out of the many he will have to go through that we thought would be the most straightforward one! We are in the process of getting Loui booked in for a second opinion however it has become clear to us that some of the treatments and operations available for him won't all be done on the NHS so we might have to look into fundraising to get him assessed and any corrective surgery carried out wherever in the world this may be.
</div>
<div><br />
</div>
<div>We first met Loui when he was a day old when we came back to the hospital with the grandparents who went in first. We were scared to meet him, not knowing at that point what to expect. When we got into the Intensive Care unit, there he was lying on his front as it was easier for him to breathe; this little innocent baby with a shock of black hair, unbeknown to him at the beginning of a long and painful journey, emotionally and physically. We were both in such a state of shock and it was a long road to get to where we are now. Loui was transferred that night to Great Ormond Street Hospital and in the weeks that followed, was sedated with an endo-tracheal tube taped in his throat, feeding tube, monitor tube and drip lines, so many wires and leads coming out from our son. We couldn't even hold him or even begin to bond as he was so dosed up on morphine to keep him sedated. Our hearts broke a bit more every day that we saw him and while the nightmare began to sink in. When Loui was 3 weeks old, against our wishes, he was taken down to theatre to perform a tracheotomy. The care and responsibility involved in looking after his tracheostomy is phenomenal and along with his feeding tube that he is constantly trying to remove, he requires 24hour care. If his tracheostomy was to come out or get blocked, it would be seconds before he would struggle to breathe, putting him in danger of brain damage or even worse. For this reason Loui has to have constant supervision and a trachy trained person with him at all times. For some of the care, like the daily tie change, Loui requires two people; sometimes even a third as he's a wriggly little boy! I have been trained up for all emergencies as well as Loui's nans. Loui requires carers to help with the night shifts but it is difficult to get as much support as we need, funded. Luke is self employed so having to go out and keep working while we struggle to make our flat that finally completed in the midst of all this, habitable ready for Loui's homecoming.
</div>
<div><br />
</div>
<div>Loui will not be able to do some of the simple things that other children may take for granted like playing in the sand or going swimming and our life paths have now taken a sudden dramatic turn.
</div>
<div><br />
</div>
<div>But, despite all of this, his character is beginning to shine through. He is strong and feisty yet so forgiving the moment unpleasant but necessary things are finished being done to him. Loui is truly the most brave little baby, going through hell everyday with what he has to endure. But he is such a loveable little boy and won the hearts of everyone who has met him so far in his short life. We just want him to lead as normal a life as we can possibly give him so we are asking for people to raise funds in any way they can. This would be to help us pay for his long term care, shortfall of carers, equipment such as a more portable suction machine and for all his future medical care, operations and procedures which will be ongoing.
</div>
<div><br />
</div>
<div>We named him Loui Legend as he is our little legend...he came into this world and shocked us both but now we would never be without him. He's our boy. When he looks up at us with his bright blue eyes and beaming smile, that's all we see and makes all the hard work seem worth it. We just wish we could take it all away for him.
</div>

tracey hayward

Anonymous

Joanne Willmott

Paulette Hamilton

Bryan Hubbard

Susan Scrafton

Julie Dougal

Julie Waleford

Isabella Tennant

Sha Wylie

Jenni rogers

Peter East

Anne Greenwood

Julie Emery

Isabella Haken

Rosemarie Lane

Marcus Maschwitz

The making of Loui Legend

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

be_supporter_comments_enabled_supported_funds

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

userEmail

template_id

userId

fundUrl

isCharityCo

email

appVersion

shouldBucketIntoExperiment

partnerId

donationCadence

isActiveFundraiser

isPartner

isMobile

npoProfileOptIn

fundIsLinkedWithMeta

hasSessionDonation

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

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

The making of Loui Legend

Still £171,855 to go. Help us build momentum.