<img src="https://d2g8igdw686xgo.cloudfront.net/56825303_1620887557320663_r.jpeg" alt="56825303_1620887557320663_r.jpeg" width="100%" media_type="3" /> This is my amazing 4 year old nephew, Jeffrey. He is a very brave little boy, who has unfortunately been one of a very small number of children diagnosed with the rare CLN2 Battens Disease. We were given the horrific news on Thursday the 6th May 2021. About 5 children per year in the UK are diagnosed and there are about 30-50 estimated affected children in the UK. This is an incurable, life limiting neurodegenerative disorder, that first presented itself as seizures about 18 months ago. The disease will mean that Jeffrey will soon start to lose his sight, speech, control of his body, ability to chew and eat, cause dementia, he will need a feeding tube fitted and it will ultimately take him from us. Children diagnosed have a life expectancy of 6 - 12 years of age and generally at age 6 require full time care.  Not only is this physically and emotionally crippling, but it also comes with a hefty financial impact too.


Jeffrey is going to be travelling from Accrington, Lancashire to Great Ormond Street Hospital (GOSH) next week for an MRI scan to decide where a shunt will be fitted in his brain. Then every 2 weeks for the rest of his life he will need to travel to GOSH for an injection, into the shunt, to hopefully slow down the awful effects of the disease. Unfortunately this will not put a stop to the progression of Battens.


Thankfully the operation itself has recently been made available on our amazing NHS! However Jeffrey will also soon need various specialist equipment, aides and adaptations in all aspects of his life, to help him sit up, bathe, eat, sleep, walk, travel etc.


His family (Sheryl, Andy and Jeff) will also soon have to move, most likely into a bungalow, to facilitate their new housing needs that his care will require. They currently live in a small 2 bed terrace house they rent that is accessed by stairs, there are also 2 sets of stairs inside and this simply isn’t going to be practical and they need to move before the end of the year. Any new home they are lucky to find will then need to be altered (door widening, wet room, installing ramps, providing suitable floor surfaces etc). The finances we have to get together in the next month or 2 to simply get him to and from his appointments is frightening, never mind what is coming. It will cost about £200-£250 each return trip to London alone.  Along with all the looming massive changes in their lives, my sister and her partner Andy, probably have 6-12 months to maximise what limited time they have left with Jeffrey to make some special memories. We would also like to make his 5th birthday (in July) extra special as it may be his last where he is mobile!  We will be forever grateful for anyone who can spare whatever money they can to help them! Funds are needed immediately and during the coming years! They will be used to help the family with travel costs, bills (given the time out of work for appointments and when one of his parents stops working to care for him), go towards uncovered costs of aides, equipment, generally giving Jefffrey a better quality of life, making some special memories, housing and ultimately funeral expenses for when we lose our Jeffrey. There may be some help from the local authority in terms of grants, but they are unlikely to cover everything, or the cost of their regular needs as the disease progresses.  Please also follow Jeffrey’s journey and help us raise awareness of this horrific disease. Hopefully one day there will be more advanced treatment available that will give children a better quality of life or even be a cure. Thank you for reading and any help you are able to donate, Louise (Jeffreys Aunty) 


Further information can be found with the Batten Disease Family Association (BDFA)

Andrew Gilbert

julie whitemoss

Anonymous

Caine Pallister

Ryan Croft

Debi D’Adamo

Victoria Mills

Genie Simmons

Lucy Wear

Julie Wynn

Alan Lynas

Karen Etchells

Wendy Ransom

Simon Johnson

Alex Richards

Huncoat United

Naimat Jan

Charlene Simpson

Jeffreys battle with Battens Disease

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

Jeffreys battle with Battens Disease

Still £57,336 to go. Help us build momentum.