Tag: rare warrior

Timeless Inc

Being involved in the Rare Disease community, I love hearing stories of hope, of passion, and of overcoming. They inspire me to live a better life, and to never take things for granted.

Recently I attended one of the hikes organised by Fit Like Mummy (such fun! You really need to join one) and at our meal afterwards she brought out some sweet chilli jam. Now, I love trying new things and this was no exception. I reached out for a Fry’s mini chipolota and dunked it into the sauce in front of me. Oh. My. Goodness. I don’t think I have ever tasted anything quite so delicious – my tastebuds were exploding, and I knew that I had to keep trying it!

Natasha told me about how it was made by a mother and her 2 daughters – in fact the daughters both have a condition known as SMA aka Spinal Muscular Atrophy.

Spinal muscular atrophy (SMA) is a group of inherited disorders characterized by a loss of certain nerve cells in the spinal cord called motor neurons or anterior horn cells. Motor neurons receive the nerve impulses transmitted from the brain to the spinal cord (brainstem) and, in turn, transmit the impulses to the muscle via the peripheral nerves. The loss of motor neurons leads to progressive muscle weakness and muscle wasting (atrophy) in muscles closest to the trunk of the body (proximal muscles) such as the shoulders, hips and back. These muscles are necessary for crawling, walking, sitting up and head control. The more severe types of SMA can affect muscles involved in feeding, swallowing and breathing. SMA is divided into subtypes based on age of onset and maximum function achieved. SMA types 0, 1, 2, 3 and 4 are inherited as autosomal recessive genetic disorders and are associated with abnormalities (mutations) in the SMN1 and SMA2 genes which are located on chromosome 5.

National organisation for rare disorders

I knew this business was one that I wanted to share on my blog, and also support personally. And I am thrilled to introduce them to you below!


Your name: Kayrashni(Pixie) and Jayrashni(Molly) Sewnarain

Business name: Pimoas trading as Timeless Inc

Social media handles: Facebook and Instagram

3 fun facts about you: Something we can never give up is finding humor in literally everything. If we could pick a time period we could live in, we would pick the 1920’s Prohibition America, it would be exciting or maybe we’ve just watch The Great Gatsby too much 🙂 and lastly we actually watch a lot of food shows and then conjure up our own recipes from there.

Tell me a little more about your business: Our business is an online store selling a range of different products, however we specialize in making our own Hotshotz sauce inspired by a traditional indian taste and a sweet chilli jam. We are experimenting with chilli chocolate and hope to launch that soon.

Tell me about the products you have available: Our two main products at the moment is the Hotshotz sauce and the Hotshotz sweet chilli jam. The sauce can be used as a marinade as well as a dip with samoosas, chilli bites and almost anything. The sweet chilli jam can be used as is or as a glaze on roast chicken, it pairs well with brie cheese and phyllo pastry and on crackers. We even made a chocolate cake with it and it is absolutely divine!

What inspired you to start this business: Inspiration came from our outlook in life and with the encouragement of friends and family to give us independence. Covid 19 has unfortunately hit a lot of industries and we feel we need to make income to support ourselves as our sister is currently not working to be able to support us.

What make your products so unique: Our products are unique because it is so versatile and can be used in almost anything. Also this is our own recipes. Each recipe has been tried and tested and perfected to how we want it.

Tell me a little more about the conditions you have: Our mom is legally blind and does not work. Our sister is in the tourism industry but unfortunately there is still no work. We have a condition called Spinal Muscular Dystrophy. We are at the advanced stages of the disease which is called atrophy. It is the degeneration of muscles over time. We have surpassed all the time lines given to us.

How can people place an order with you: At the moment, orders are placed telephonically (0827864184) or through Facebook and Instagram.

What product is your absolute favourite: Pixie: Absolute favourite is the sauce as it acts as a marinade for meats and is stunning on roast leg of lamb. Molly: Sweet chilli jam as I love the sweetness and the heat combined.

Quote you live by:

“The human spirit is one of ability, perseverance, and courage that no disability can steal away.”

disability awareness

Anything else you want to add: We would like to add that for years we were led to believe that we were not capable of achieving much, yet we knew there is so much we could do. It was only with a little support and encouragement that we found the drive to follow our dreams and make it a reality. This was possible only by surrounding ourselves with positivity and people that uplift us.


I absolutely love these products, and learning more about their journey has made me love them even more. What a brilliant way to turn COVID-19 on it’s head, and also ensure that they are still able to support themselves no matter the circumstances they find themselves in. These sauces and jams are the perfect accompaniment to nearly any meal – even for people like me that can’t usually handle any heat.

Enjoy! Your tastebuds (and family) will thank you x


Better Box

Candice is a friend of mine that I met through Rare Diseases South Africa. She is such a brave woman, and is someone who is always looking for ways to make others happy. She reached out to me before lockdown about her idea for “Better Box”, and asked if she could include some of our Rare Bears in it. We discussed what she was planning to do, and I knew that this was really something special! Each box is put together with so much love and thought, and she is spreading kindness with every one sent out. Keep reading to learn more about this project, and see just how special it really is.


Your name: Candice Schutte

Business name: Better Box

Social media handles: Website, Instagram and Facebook

Some fun facts about you: I am a fun loving mom of 2 with a passion for anything creative and quirky. I have always been community driven working with Girl Guides Association SA, headed up CI for workplaces and was Miss Cansa 2000. I fundamentally believe in the value Kindness is Contagious and this is the mark I want to leave on the universe.

Tell me a little more about this business: Better Box was dreamt up in my hospital bed. Many times I lay in hospital having a real pity party for myself – the pinnacle being my 30th Birthday! I knew that people cared and were concerned for me but when you are chronically ill people assume that after a while you just ‘got this’. Actually though you don’t, because every time you end up back in hospital its a knock to your emotional and physical state. I just want Better Box to be the little glimmer of hope for people when they are at their low, this can be in any way , shape or form. Its a little Box of Happiness to let someone know that someone cares.

What inspired you to start it: I inspired myself to start. I am currently on medical disability due to my Rare Diseases and can no longer work in a traditional workplace. Most of the work for Better Box is co ordinated by me but my family are hugely involved due to my health. I lost my dad to Marfan’s Syndrome when I was 14 and my mom to Leukemia a few years back. While my mom went through chemo I stopped working to care for her and was at the hospital every day taking food and clothes to the others in the ward with her. I 100% know that is where my passion for this really started, I just had no idea the way my life and health would take me to Better Box.

Who are some of the brands that have come on board: The suppliers for Better Box have been carefully selected as I wanted to empower small businesses run by mommies, Rare Diseases patients as well as give back to a community in some way. I would not have Better box without the Rare Bear Project and they are an integral part of my boxes. Other brands include KwirkNation, Creative Junction, Mammamade, Knits and Knots, Wylie B Vinyl crafts, Gift Boss, Oh Soap Crazy, and Hope Soaps.

How can people order one: Please go to www.betterbox.co.za to order online and email hello@betterbox.co.za for any kind of customisation.

Why do you think this is such a great idea: So much love and care goes into preparing each box, the goodies inside are practical, fun and quirky. I dare you not to Smile!

Who do you think would enjoy one: Everyone loves to feel good and spoilt!

How did you decide on each item in the box: Our Signature Box the ‘Go Box’, is designed to include everything you would need for an emergency hospital stay – believe me I have forgotten more than one of these items even when I have prepared!

Whats in the box?
Everything you would need for a hospital visit !

  • Custom made drip friendly Better Box sleep shirt
  • Warm comfy socks
  • Bamboozles toothbrush and toothpaste
  • Mini soaps and sponge
  • Earphones to tune out and chill
  • A little something to snack on
  • Colouring in to keep the mind busy and relaxed

Other boxes: Snack Box, Bump Box for new mommies, Brave Box for little ones, Be happy Box, FU Cancer Box, Donate a Box and the Box Fund
We are also running a Pay it Forward campaign:
We challenge you to buy a box for someone you know or we donate to ,and nominate a friend to do the same, every 10th box will be up for grabs for the people that purchased to gift or keep for themselves! Pay it forward, kindness is contagious!!
Lets get a Better Box chain going!
Show off your nominations and acts of kindness and don’t forget to tag us! #payitforward #kindness #cancer

What has it been like living with a rare disease: The last 12 years have been exhausting and painful. I have had countless surgeries, 36 kidney stones, gone blind in my left eye and now chronic fatigue, pain and hands that do not co operate. I am however grateful that I finally have a diagnosis as well as the ability to speak up for those with rare Disease!

Quote you live by: It costs nothing to be kind.


I absolutely adore everything that Candice and Better Box stand for, and have loved seeing her dream come alive. She has even sent a box to a friend of mine who is currently battling cancer, and it made my friend feel so special as well as reminding her just how much she means to so many of us.

If you would like to get involved in this, or perhaps even purchase one for a friend, please reach out to Candice via social media or email. Speaking from experience, I can vouch for just how much it means to receive a gift while in hospital or feeling rotten – because no matter how “normal” it is to be admitted, it honestly never gets easier.


Smergos

I met Nick & Nicole some time ago through a media event that we were both at, & they then had me over for an interview about invisible illnesses.  I was immediately drawn to their love & passion, & I clicked with them on a level usually reserved for friends for many years.  We laughed, teased each other & felt so comfortable finding our groove together.  I knew that I wanted to spend more time with them & learn more about their business, Smergos.

Time has run away from us as we all have busy lives with work, doctor’s visits & life plans (ahem – Nick’s wedding coming up!).  So I was so thrilled when they reached out to me & asked if I would meet them at Starbucks for a chat one weekend.  What was meant to be a quick half hour meeting turned into a 2 hour giggle fest (with plenty of frappuccinos!) along with discussing plans going forward.

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The first to come out of the meeting was that I HAD to do a blog on them.  I have never met people like them before, & their business plan is amazing.  They are changing the world for differently-abled people, & showing society that we all belong together whilst constantly inspiring motion.

The second is that they are offering a discount code on their Smergos Life products to everyone who reads this blog (more on this at the end…).

And lastly, we are partnering up through the Rare Bear Project!  You can now add a Rare Bear to your order through Smergos, & we are one of their chosen charities that they will be giving back to.  How flipping cool is that?

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Your names:  Nick (Nicholas when I’m in trouble) Smit & Nicole Vergos

Business name:  Smergos PTY Ltd

Social Media Handles:  YouTubeFacebookInstagramLinkedinWebsite

Tell me a bit more about each of you:

NS:  I was injured in a car accident when I was 6 months old and as a result I have Cerebral Palsy with Hemiplegia. Basically this means that the right side of my brain was damaged which has affected the left side of my body. However, I don’t let this get in the way of living life. I have Bachelor’s degree in education with majors in Maths and Biology. I run a small tutoring company & Smergos and teach part-time. I’m a professional speaker. I love music and dancing (especially Salsa) and I play pool. I’ve also ticked off sky-diving from my bucket list.

NV:  I was born with a genetic condition called Osteogenesis Imperfecta (OI), otherwise known as Brittle Bones. To be put simply, it means my body produces some type 1 collagen but not a sufficient amount, and as result my bones are not as strong as the average person’s. There is currently no cure for OI.

I’m an account manager at a leading global market research agency, specialising in consumer insights. Although my goal is to eventually be involved in Smergos fulltime. I’m motivated by change – I’m always looking for ways to keep moving forward and to improve my self-development.

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Tell me a bit more about Smergos:  Smergos changes lives by designing, manufacturing, donating and selling accessories for wheelchairs. The products are very diverse as some are functional while others are to express one’s personality or are specialised to suit disabled sports teams and we even have a range of products that are for everyone, not only for those with a disability. We have recently also started working on an accessibility rating platform that offers an app to the public, accessibility auditing for buildings, etc as well as connecting the owners of these spaces to companies that can help them upgrade their facilities to improve their accessibility.

We are both very passionate about Smergos as we both have a disability and understand the challenges that face those with disabilities on a daily basis. Our slogan is ‘Inspiring Motion’ as we aim to do this in the disabled community as well as help break down the barriers in society between those with and those without disabilities.

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Where did the idea for this business come from:  The Smergos story began one morning back in 2012 as Nick was thinking about what he could give Nicole on her next birthday. He recognised that she often struggled to carry or keep her belongings on her lap while using her hands to push herself in her wheelchair. A wheelchair bag was the obvious solution. It would be functional yet also original and distinctively Nicole.

The more he thought about the idea, the more Nick began to see far bigger possibilities. That afternoon, he called Nicole and asked her if she would like to make something that could change lives. Her response? “Definitely! I’m in!” The concept of Smergos was born.

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Why the passion for this industry:  Through our personal experience as people with disabilities we have always found it difficult to find products that are created for us or work the way we need them to. We are tired of this being the case. Why can a person without a disability go to the shops and find, for example, at least 10 different bags to choose from? However, when it comes to one for a person with a disability we can’t find anything and have to scour the internet and then pay exorbitant prices, because it’s a ‘specialised’ item.

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Why are your products so unique:  We didn’t take any existing product (especially those created for a person without a disability) and try fit these onto a wheelchair. We design our products from scratch. Often sitting in my lounge and strapping paper / material onto Nicole’s wheelchair and doing some intense problem-solving.

We also try create a range of products that are functional but also some that help portray the personality of the person in the wheelchair so the wheelchair becomes an extension of them and not this dreaded appendage.

Where can people buy your products from:  On our website – Vensy E-mall and Takealot coming soon.

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Tell me more about the different parts of Smergos:

Smergos Original – Products specifically created to fit onto a wheelchair or to be used by a person in a wheelchair

Smergos Sport – Products specifically created to fit onto sports wheelchairs and help them train, excel during a game or for comfort.

Smergos Life – Products created to suit those with or without disabilities. Because we always want to make a person with a disabilities life easier we created a ‘Buy-1-give-1’ model for only this range of products. This means that for every product sold a product will be donated to a person with a disability who needs our products but cannot afford them.

Smergos Electric – In the next few years / sooner we aim to develop a range of products that can be fitted onto a normal wheelchair and give it some electric features. I can’t tell you more than that – The rest is a secret.

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Quote you live by:

NS: “The greatest risk is not taking one.” – Unknown
NV: “We are here to laugh at the odds and live our lives so well that death will tremble to take us” – Charles Bukowski

Anything else you want to add:  In our effort to break down the barriers between those with and those without disabilities we are hosting social gatherings once a month (usually the second / last Sunday of the month). Please follow us on social media to see the details of these events and see you at the next one.

Our big goal is to eventually open a ‘Accessibility Store’ in a shopping centre. It will offer a range of products (ours & other suppliers) to suit all disabilities.

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Aren’t these amazing?  And isn’t it great that differently-abled people are now FINALLY getting some fun additions to make their lives a little easier?

And now…  You can get your very own laptop bag from Smergos Life.  “Smergos Life offers a range of products that anyone can use. For every product you purchase from Smergos Life, we’ll donate a wheelchair bag to a person in need. This buy one, give one model is exclusive to Smergos Life.

My discount code is “FLOWERhere so let’s spread the love during this month of love.  Together we can make this world a better place!


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Smergos Story

Co. profile Nov 2019

Hospital Spoils

I have been admitted into hospital over 100 times – easily.  The first year of my diagnosis saw me spending more time in hospital than I did at home.  I have had over 20 operations (I can’t remember the exact number & to be honest can’t even remember all the operations – I try to block these from my memory once they are over).  This means a LOT of time spent lying in a hospital bed.  It means sore muscles, hairy legs, uncomfortable beds, greasy hair, being run-down & generally just feeling rotten.

It means long days of doing nothing, & not wanting to actually watch one more TV show that is on repeat.  I often beg my husband to just rub my feet as I crave human touch & my feet ACHE from not being used.  So when I saw a new business here in Joburg North being advertised, I was super excited.

Hospital Spoils is a relatively new business that will come to you in hospital, or whilst you are recovering at home.  In fact, they even came to my office in Broadacres to pamper me there.

They reached out to me to offer me a treatment of my choice (of course I went for a shoulder, neck & head massage!) & I knew that my fellow rare warrior friends & hospital frequent-ers would be super excited about this idea.


Your name:  Dr Claire Mitchell – Specialist General Surgeon and CEO & Sarah Saffy – Managing Director

Business name:  Hospital Spoils

Social media handles:  WebsiteFacebookInstagram

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Tell me a bit more about your business:  Hospital Spoils is a specialised mobile spa with medically trained therapists that offer manicures, pedicures, massages and hair wash and blow – dry’s right at your bedside. Started by a Specialist Surgeon, servicing hospitals, clinics, retirement and private homes in the north of JHB and surrounding areas. Perfect for people in hospital or at home – new mom’s, post op, elderly, unwell and those who are house bound.

Where did the idea for this come from:

 

What area do you work in:  Hospitals, retirement villages, old age homes, rehab facilities and private homes in Joburg North.

How can people book you to come to them:  Call or WhatsApp 083 778 4741

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Are your therapists trained beauty therapists:  Yes and hair stylists!

See full pricelist here:  HS Digital Leaflet Insert 2

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I was so impressed with the level of hygiene & care that was taken throughout my treatment.  And you can tell that the therapists really care about what they are doing – it is so much more than a job for them.  They really want to help you feel better about yourself, & take away some of the stress that you have been experiencing.

My favourite part was that I was constantly kept informed via Whatsapp on what was on offer, who my therapist would be, confirmation of my appointment, an invoice, & then I was sent a message following my treatment to rate how it went & if they can improve in any way.  Customer service is of the utmost importance – especially in this area & when you are dealing with people who are either sick or recovering from some downtime.

I can absolutely say, without any hesitation, that I recommend Hospital Spoils for anyone & everyone.  And I know who my first call during my next hospital admission will be to!

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