<div>
 I’m going to try and go down the private route for treatment until it becomes available on the NHS. It is a long read but for people to understand, I have to put all the details in.
</div>
<div>
 <br>
</div>
<div>
 If you know me, you’ll know how difficult it is for me to put myself out there like this. I hate the thought of putting my health and my situation out there for everyone to see. But I’ve reached a point where I have to try everything I possibly can.
</div>
<div>
 If you don’t know my story, I have a genetic condition called Friedrichs Ataxia (FA). It’s a progressive condition that ultimately affects every part of your body except your brain. Both of my brothers had it too, and I lost them both to it. Chris died in 2016 at 29 and Dan was 19 which was in 2009.
</div>
<div>
 Back when Chris and Dan were diagnosed, even less professionals had heard of it then than they have now. My mum wasn’t really given much information on it and was actually wrongly told at the time there was pretty much no chance me or my sister would have it. They said that it was more common in boys and only 1 out of her 4 children had the chance of having it, so the fact 2 did basically ruled us out.
</div>
<div>
 When Chris died in 2016 out of probably absolute grief I started reading up on the condition.At this point I had absolutely no symptoms, but the more I researched it I realised actually it is nothing to do with your gender. And also the statists of my mums children developing it were miscommunicated. Regardless of the gender, or how many children my mum had each, baby had a 25% chance of developing it as both parents carried the gene. All 4 of us had the same chance. Chris, Dan, and me all fell into that 25% chance and got the condition.
</div>
<div>
 My sister thankfully didn’t. I decided to get genetically tested and I honestly didn’t think I’d have it. I did, and it came back positive.
</div>
<div>
 <br>
</div>
<div>
 For years, hardly anyone knew. I kept it to myself. I didn’t really think about it and i carried on with life. I did start noticing things as time went on, I was always in the gym and I’d notice there were certain exercises I just couldn’t really do anymore. I noticed I’d started holding on when on the treadmill. There was always just new little things I’d notice about myself over time.
</div>
<div>
 <br>
</div>
<div>
 But this year, things have started getting worse, and the reality of what this condition could mean for my future has become impossible to ignore.
</div>
<div>
 I’m one of the luckier ones in the sense that my symptoms started later than they do for many people. But this is a progressive condition. It starts with things like clumsiness and poor balance, and over time it can affect your ability to walk, your independence and eventually your heart.
</div>
<div>
 The average life expectancy is only into the mid-30s. I’m about to turn 33.
</div>
<div>
 I’m just a mum with 3 children. I don’t want anything special. I just want to be here. I want to watch them grow up and I want to be able to take them places, make memories with them and just be with them.
</div>
<div>
 I do everything I can to keep myself as well as possible. I work, I try to carry on as normal and I refuse to let this condition completely take over my life.
</div>
<div>
 <br>
</div>
<div>
 There is a medication that could help slow the progression of my condition. The medication is already being used in America and in countries across Europe. The UK have approved it, but it isn’t available through the NHS.
</div>
<div>
 The private cost is around £250,000 per year
</div>
<div>
 Obviously, that is completely impossible for an ordinary family to fund. The petition is to get this medication made available on the NHS. We’re still trying to reach 100,000 so it can be debated in Parliament. But while I’m fighting that battle, I’m also having to face the reality that I cannot just sit and wait and hope that something changes.I need to try to access this medication somehow.
</div>
<div>
 So, as difficult as it is for me to ask this, I’ve set up this page to try and raise enough money to pay for the medication privately.
</div>
<div>
 I know the amount is huge. I know I’m asking for something that probably feels impossible. But I have to try. Even if we don’t get anywhere near the full amount, every single penny raised could help me get access to treatment until it is hopefully available through the NHS.
</div>
<div>
 I’ve never wanted people to feel sorry for me, and I still don’t. I’ve carried this for 10 years without people knowing, I just want a chance.
</div>
<div>
 <br>
</div>
<div>
 A chance to slow this condition down. A chance to stay as healthy and independent as I can. A chance to have more time with my kids. It’s been hard to put this out but I would also regret it if I didn’t just try.
</div>
<div>
 <br>
</div>
<div>
 Thank you for reading this, (it was long I know)and for sharing it, donating if you can, and for supporting me
</div>

Anonymous

Frances Bouyakhf

L Hamilton

Aimee Stretton

Nikki Re

Lucy Robertson

Daniel Parker

Rebecca Kirkpatrick

Morgan Barr

Natalie Ford

Eileen Flounders

Rachel Fowkes

Rachael Webster

stacey turner

Alison HOWARTH

Private Friedrichs Ataxia medication

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

Private Friedrichs Ataxia medication

Still £47,045 to go. Help us build momentum.