<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/65181539_166176227712765_r." width="100%" />
<div><br />
</div>
<div>Hi, my name is Aaron. I am doing this challenge to raise awareness for STXBP1 and to raise funds to help my son, Theoden's school, Astley Park who have been instrumental in his development and growth. I plan on walking what some say is the toughest long distance hike in the UK, The Cape Wrath trail. The trail is a 230 miles, wild camping hike over 15 - 20 days through some of Scotland’s most isolated and wild regions. I’m doing this to show what children like Theoden go through everyday of their life battling against the odds.
</div>
<div> 
</div>
<div>THEODENS STORY
</div>
<div> 
</div>
<div>Theoden was born on the 15th April 2015 and only a few months later in October we were sat in the hospital with him fighting to be seen and treated. One morning we noticed Theoden was having seizures and we knew something was wrong instantly. We took him to the hospital and got sent home being told it was convulsions. Days later it kept happening and we went back to the hospital but again we were sent home with the same diagnosis and almost with the feeling that we where over reacting, we knew it was not convulsions. The symptoms did not subside so this time we went to the hospital and refused to accept the diagnosis. Theoden was our child and we knew something wasn’t right. This time while at the hospital Theoden suffered a seizure in front of the nurse and they finally realised we were not neurotic over protective parents. This however was just the start, at the time we didn’t realise how rare Theoden's condition was or how hard it would be to get a diagnosis. The only information we were given was that Theoden was suffering from epilepsy and he may never walk or talk because the extent of the damage caused by the seizures would not be present until later life, for me this was the worst part. The not knowing what caused this, what Theoden's quality of life would be like and what we could do as parents to support him. This made everything harder, with a diagnosis you at least you know what you are up against and you can begin to plan for the future. The first real signs of Theoden's disabilities became more apparent when he started nursery and primary school. He started nursery and still couldn’t walk, talk and could only just feed himself. Shortly after this Theoden started to prove medical opinion wrong, just before primary school he started to walk and now at the age of 7 he can talk (although very limited vocabulary). Theoden started primary school and at first he was doing really well considering the circumstances but as time went on the gap began to widen substantially between him and his classmates, despite the help and support of the school. Theoden's diagnosis didn’t come until he was 5 years old when he got selected for genes testing. We believed for some strange reason ( naivety maybe or a parents blind hope ) this would solve all of Theoden's problems but even after the diagnosis things didn’t get easier because Theoden's disability is so rare. One thing he did gain from the diagnosis was the ability to apply for a specialist school, which could cater to his needs more.
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/65181539_1661762198878863_r." width="100%" />
<div><br />
</div>
<div> 
</div>
<div>STXBP1
</div>
<div> 
</div>
<div>Only 700 people around the world are diagnosed with stxbp1 and no other child on Earth has Theoden's genetic code in the STXBP1 gene. STXBP1 is a neurodevelopment condition that was only discovered in 2008 in individuals with severe neonatal epilepsy. Children with STXBP1 normally start with infantile seizures and most will also suffer from lifelong seizures as well as developmental delays, intellectual disability, muscle hypertonia &amp; ataxia and autistic spectrum traits. STXBP1 research into causes or cures is not funded by the UK government. It is only researched in the USA and that is funded mainly by the parents of STXBP1 children. The tax implications mean we can not help the stxbp1 foundation as much as we would like too. This is why we need to raise awareness in the UK because 1000s more children could be living with stxbp1 and because of the government’s lack of funding these children will keep going unnoticed and undiagnosed.
</div>
<div> 
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/65181539_1661762240812032_r." width="100%" />
<div><br />
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/65181539_1661770984454723_r." width="100%" />
<div><br />
</div>
<div> 
</div>
<div>WHAT THE FUNDRAISING IS FOR
</div>
<div> 
</div>
<div>We found that children who were far more able bodied than Theoden were getting so much more help and support because the disability they had was more visible or more recognised. This is why Astley Park became so significant to us and to Theoden. Once Theoden had his diagnosis we were able to apply for a specialist school, we chose Astley park for many different reasons but we didn’t anticipate the impact it would actually have on Theoden's development, the difference in Theoden since starting is unbelievable. I feel we had been so used to being let down by the experts surrounding Theoden that we didn’t believe this would have such an impact but how wrong we were. His overall happiness and well-being has increased considerably as well as his ability to communicate and play. We now feel Theoden is part of a group/family/school that enables him to be comfortable, maximise his potential and learn things his own way. We would like to highlight the work that these types of schools do every day with thousands of children up and down the country and say THANK YOU
</div>
<div><a href="https://www.astleypark.lancs.sch.uk" target="_blank" rel="noreferrer noopener"><a href="https://www.astleypark.lancs.sch.uk/" target="_blank" class="" rel="nofollow noopener noreferrer">https://www.astleypark.lancs.sch.uk/</a></a>
</div>
<div> 
</div><img alt="" media_type="3" src="https://d2g8igdw686xgo.cloudfront.net/65181539_1661762224916363_r." width="100%" />
<div><br />
</div>
<div> 
</div>
<div>We hope to raise awareness for STXBP1 so other parents who are going through similar things can hopefully get their diagnosis or just knowledge of the community and help that is out there. We also hope to raise enough money to fund a new garden or outdoor area for Astley Park which will help the children have more of a connection with nature. All contributions will go to Astley Park School to say thank you for the wonderful job they do every single day helping these children flourish.
</div>

Anonymous

Amy Burgess

Jackie Moys

Susan Newman

Corinne Spear

Susan Warren

Sylvia Riley

Sharon Phizacklea

Lilian McGee

Pauline Muir

Alexandra LANSIQUOT

Michelle booth

Suzanne Melia

Carole Matheson

Sanderson Joanne

Harry Pate

Deborah Rowe

Enduring the cape wrath trail for education

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

Enter your donation forEnduring the cape wrath trail for education