Vanna’s Story

Update: 3 June 2024

We just wanted to take a moment to give you an update and share some very, very exciting news with you as well!

Even though we haven’t actively been promoting this for a while now, we started a fundraiser in March, to help raise money towards getting our daughter on the generic, of a genetic modulating drug (named “Trixacar”, from Argentina). This drug is one of the first of its kind, to treat the underlying genetic fault that causes Cystic Fibrosis. It doesn’t cure it, but instead of treating the many symptoms associated with this disease – it targets the faulty gene itself.

It is a hugely costly drug, costing around $320 000 for the original (called “Trikafta”, manufactured by Vertex Pharmaceuticals in the U.S.A.), per year, per person.

Close friends of ours have for years been telling us to do a fundraiser for all the medical costs related to Cystic Fibrosis. Whilst we have been involved in fundraising initiatives for other people before, this was our first time attempting it (for our family). So, we just want to firstly say an absolutely HUGE thanks to each person who donated to this cause. We cannot tell you how much your love and support has meant to us. Do you know there are few times in your life where you just feel so blessed by people’s hearts towards you? This was one of those precious times.

From the person who could only donate R50 (who gave a “mite”, with might!).
To the close friend, who pulled her family together, to not only advocate and share, but also even got her kids involved to raise money.
To the friend that I haven’t seen in almost 20 years, who immediately went to the bank to donate.
To those family, who not only got involved, but also donated.
To those who were able to be so very generous in donating, some as much as $1000 (you know who you are!).
To those who donated from countries far, far away.
To those who are young adults and don’t have much spare to give, but you gave.
To those who donated more than once.
To those who gave privately.
To those who also have their own sick family members, or who are sick themselves, who gave.
To those who don’t even know us.
Oh my gosh, to the CF Moms and Dads.
To the businesses who helped us.
To the shares on social media and prayers in private.
To Breathtaking NPC, for all you have done to facilitate this for us, you have been so amazing.
To each and everyone – thank you from the bottom of our hearts!

About five weeks ago, we got official word that our specific medical insurance, will now be bringing the original drug (Trikafta) into South Africa – and that there will be more funding provided for people who are on Discovery Medical Aid (only on the two top tier, highest cost plans). This is a miracle so gigantic and huge, that we are still processing it ourselves, with lots of buffering and downloading still happening! This whole process (paperwork, applications and authorisations), has taken quite a while and we needed to wait to see how it unfolded and materialised, before updating everyone. This week Vanna received her very first box of Trikafta. In our wildest prayers, hopes, dreams and imaginations – we could not ourselves have made this happen. We cannot praise God enough for this miracle for Vanna!

It is our prayer, that to each person who gave, according to the abundance of heart in which you gave – may God do a “Trikafta-type” miracle in your life. You may not need Trikafta, but we can all do with a miracle that big. That is our prayer for you, and that when it happens, you will remember! It is also our sincere hope and prayer, that this miracle will extend to each person in South Africa that has Cystic Fibrosis. As well as to other countries who do not have access yet.

For now, we will be closing off the official Breathtaking fundraiser. Each and every cent that we raised for the medical expenses (for Cystic Fibrosis related costs), will be used for the many medical financial shortfalls that we have to cover. If you ever feel like you still want to give, we have created a separate banking account for these costs, just send me a private message and I will send you the details.

Thank you, a million times over. May God bless you richly!

Where it all started:

 To all those who have cared, loved and supported us through the years, we want to appeal to you for help. We find ourselves in one of those very big life moments, where this is so much bigger than just us – and we cannot do it alone.

As most of you may know, our daughter, Vanna, was diagnosed with Cystic Fibrosis (CF) at the age of 3 months. In a very nutshell explanation, CF is a medically incurable genetic disorder, which affects multiple organs, yet is incredibly and particularly damaging to the lungs. It is often called “the fight to breathe”, because a genetic flaw that is essentially on relentless “daily replay”, causes thick and sticky mucus to block the airways. Sticky mucus becomes a breeding ground for bacteria, viruses and infection. This and the damage it causes, in turn, makes each breath (which should come without much effort) – into superhero status work, for someone living with CF. If you want to have an idea of what it feels like to breathe like someone with CF, take a straw and breathe solely through the straw. Then carry on with your daily tasks, whilst only allowing yourself the breath you can take in and out through the straw.  It is an eye opening exercise.

Vanna’s current daily life includes several nebulising treatments, managing and taking huge amounts of medication, including daily antibiotics to keep infections at bay, or treat current ones – and daily physiotherapy (to clear out mucus). It also includes frequent hospitalisations when oral antibiotics no longer work. Vanna is presently resistant, or allergic to all the oral medication that can be used to treat the bugs in her lungs. Over the years of this struggle, her lung function has deteriorated significantly. Her current lung function is 47% and has been as low as 38%. Medically, CF is a progressive and life shortening disease and the overriding majority of medication for people living with CF, treat the complications of it, and not the genetic cause. Besides the daily complications of living with CF and fighting to breathe, our daughter has also faced many personal struggles relating to frequent hospitalisation, multiple surgeries, isolation, bullying at school and other emotionally painful situations that has happened to her. She has spent birthdays (including her 18^th), familial special events and a Christmas in hospital. Even though, she has been an inspiration to many, not only in bravery, but also in gentleness and love, it is an honest statement – that CF has dramatically influenced the quality of her life, in every way.

Medical advances over the years, has been so astronomical, that only 40 years ago, many people with CF did not live past the age of 2! About 5 years ago, a pharmaceutical company (Vertex pharmaceuticals, based in the U.S.A.) developed a drug (Trikafta), which is a “genetic modulator”. This drug in essence, is not a cure, but has become known as a “miracle drug”, because of its life changing effects on many people living with CF (who has access to it). Instead of treating the many complications, this drug specifically addresses and modulates the faulty gene in CF. To many people and Countries, this drug is still not available, including our country – South Africa. It currently costs about R5 million per person, for this drug. Vertex Pharmaceuticals has been blocking access to this miracle drug through extremely high prices and in 2023 alone, have made a profit of 10 billion dollars. This is causing many people with CF, who have the right to breathe, to die young, or suffer unnecessarily.

There are currently worldwide campaigns (like #VertexSaveUs) and a court case/s to address this, however this may still take time – which we don’t have. Presently there is a way to get this drug legally (under the generic name, Trixacar), from Argentina. The monthly cost of the drug is currently R121 000 per person (depending on the dosage taken and exchange rates). Many of those people with CF in South Africa, who have been able to obtain Trixacar, have seen hugely positive life changing benefits, including an increase in lung function. Our medical aid now offers a small rebate for the drug and because of this, for the first time, we are attempting to procure this drug for Vanna. I am sure that you can imagine that R121 000 for monthly medication (even with the small rebate from medical aid), is just something that still seems like an impossibility. To us, this fundraiser is really a giant leap of faith. With your help and the help of the amazing CF Specialist Team here in South Africa, we will make use of an adjusted dose, to make this more of a possibility for Vanna, until this drug is hopefully available in our Country.

Here’s how you can help:

1. Make a Donation: Your generous contribution will go a long way in supporting Vanna’s cause.

2. Spread the Word: Share our story with friends, family, and colleagues. Your voice can inspire others to join our challenging mission.

3. Volunteer: If you have time and skills to offer, we welcome volunteers to assist in organizing fundraising activities.

4. Corporate Donation: If you represent a Company, a Section 18A Certificate can be provided to you through our fundraising organisation, Breathtaking Fundraising NPC.

How will funds raised be used:

Funds raised will be used towards procuring a few initial start-up boxes of the medical drug, Trixacar (or any other similar genetic modulators that may arise), for Vanna. Where the need arises, it will also cover associated costs (travel costs required to travel to Argentina for the procurement). Other costs that may also be covered, will be for medical appointments and other medical expenses incurred related to CF.

Every contribution, no matter how big, or small means so much to us. We have tried our heartfelt best to live generous lives ourselves, with the principle that “you can never out give God” – but this time, we are humbly reaching out for help. We all have the opportunity to make an impact in each other’s lives. CF has impacted Vanna’s whole life – spiritually, emotionally and physically. Like so many young adults her age, she has hopes and dreams for her future. We are hoping to make Vanna’s “fight to breathe” lighter. To give her that possibility of a brighter and healthier future. In God, she surely has a hope and a future – and sometimes He uses people in that process too. Our own personal campaign always remains: #JesusSaveUs.

We have put together a short video of some of Vanna’s journey – realising that a visual presentation can be so much better at telling a story.

Our sincere and heartfelt thanks to Michael Dolby from MLD Marketing Solutions, for doing this video for Vanna.