my condition Cystinosis affects my kidneys my eyes and my bones it only affects around 3000
people worldwide my condition's so rare that sometimes i have to teach doctors about it
i've used makeup as a form of therapy through times of bad health and this has made me really
passionate about making sure everyone can experience the power of makeup like i have
i'm so excited about launching my makeup brand it's been about three years in the making
my condition is called Cystinosis it's really rare there's only three thousand of us worldwide
it's a genetic metabolic condition which means a protein called cysteine builds
up in my organs and cells it mainly affects kidneys and then it kind of also affects my
eyes and then later on in life other organs that's my tablet alarm this is my biggest
kind of medication um as i have to take it four times a day every six hours so i have to
wake up in the middle of the night to take it i have to take about 30 tablets a day
this is really brilliant because this is when you're still eating we're trying to this is
when we first realized that something wasn't quite right i was too fed from around the age
of one this was kind of around the age i was diagnosed when my parents realized when i was
moving from um kind of milk to solids i wouldn't keep anything down when i was young my condition
affected me quite a lot my parents used to have to get up during the night as i was vomiting and
i'd wet the beds several times a night when we were told by doctors and you were diagnosed it
was pretty much one of the worst days of my life the thing that made you realize you were different
is people's reactions at school i definitely felt different because my height kids are mean
i did get bullied for my height but mainly when i was a teenager my height is four foot seven
a lot of doctors don't understand my condition i've literally sat
while a doctor's googled my condition or i've been telling them about my condition and even when you
had the tube down people used to stare and point every now and again somebody come over and say
is your daughter all right or what's that for which is lovely because they were curious i think
the key moment was when you decided you wanted to eat for yourself and you had very headstrong views
actually then it was around the same time that you were taking control of your medications as well
in order for you to lose your tube you had to start swallowing multiple tablets and big tablets
when i was 18 i'd finally managed to teach myself to eat and eventually i proved enough for them to
remove it so you didn't eat your entire life and the first thing you ever had was phillips steak
and that's all you ate then for about a year i used to chew my food loads and then i used the
because i knew how to swallow tablets i used to swallow my food like i did the tablet so i'd
chew it put it on my tongue and then drink with some water and that's why i used to get so full
because i'd have a jug of water to myself in the last four years i've had two kidney transplants
my first transplant was from my mum unfortunately i got a blood clot and there were lots of
complications which ended up me being extremely ill and ended up in icu for over three months
you've always been unbelievably resilient you've always been unbelievably
bright bright and and tough and determined and i know that's partly because of your condition
partly because of the treatment you've had but it's serving you so well now really
i've always really been passionate about makeup as it's a huge part of my life in terms of me
becoming confident i've always been really creative and it's kind of like an art form
makeup allowed me to kind of express myself and use it kind of as a form of therapy so this is
kind of what made me want to start my own brand my brand's called human beauty because i believe that
every human being is beautiful and it's all about embracing what makes us unique as human beings
these are the final samples of two products that we're going to launch in a couple of months
which is super exciting because this is the first time i've seen it
so the best thing about this is i have a qr code that you can scan on the back of my palette
this would lead you to a video of me verbally describing each shade in detail to help those
who are visually impaired and blind the wand is uniquely developed because it can be applied
vertically and horizontally which enables it to be used by people who have mobility issues i'm having
my first ever product photo shoot for my makeup line which is really exciting and
then i'm meeting my friend poppy later to discuss her when i have a catch-up
this one i want from like above like a flat lay and i might get um a piece of paper or something
so we can have different kind of backgrounds yeah sure but yeah that's that one from above
the photo shoot's going really well it's really exciting to see kind of the products together
yeah that's cool i'm so excited about launching my makeup brand it's been about three years in the
making and product development i'm just so excited to get my products in the hands of everyone
i really really love them well done sam thank you
how did the shoot go it went really really well so good seeing all the products like come to life
and the photos turned up really well that's amazing i'm so excited
i know it's so exciting i can't wait i can't wait to see everything
i think millie's handling her condition better than i would or anyone else i know would she's
literally the strongest person i've ever met millie absolutely inspires me to see the
beautiful things in life and not want to give up regardless of what kind of gets in my way
i'm definitely a really positive person i never like to dwell on the negatives and always trying
to find a positive out of a situation my condition has made me who i am 100 i think
the fact that i've gone through so much hard times has made me a much more stronger resilient and
motivated person and that i just want to live life to the fullest i'm unapologetically me and i found
this through kind of my hair colour my makeup and my fashion has really helped me embrace who i am
we have two trans kids anyone can be whoever they want i'm just owning it
our family is seen to be very unconventional so i had kids and i can't be hot anymore like
moms are hot too people say i look like a thug but i love books i take that as a compliment
i'm bored of people thinking that i cannot be intimate i'm a young single
hot piece of disabled booty i feel like i'm going to look at myself and be like who is that
life is way too short to be hiding it is my story it is my truth
you