Social Media Helps Father Get Life Vest for Daughter

Nothing was going to stop Vincent Zwarts from getting the life-saving percussion vest for his daughter Sabrina. So he enlisted the help of Social Media and with the help of the local community, he succeeded!

We recently interviewed Vincent about his successful campaign.

SMSM: Tell us about “Helping Sabrina Breathe.”

VZ: Sabrina and I are a Father/Daughter team. “Help Sabrina Breathe” started because I want my daughter Sabrina, who has Cystic Fibrosis (CF), to live life to the fullest and have treatments available to her that are not available in Australia. These treatments give quality of life and had to be imported from America. I lost my daughter Jessica to CF in May 2013 at 18 years 6 months and I want for Sabrina to live life. Sabrina is 17 years old. In Australia, a person that has CF is lucky to make it to their mid to late 20s and early 30s. In countries overseas the life span of a person with CF is late 40s to early 50s.

SMSM: Why did your fundraising campaign start?

VZ: I have always been able to look after my children but the treatments we are talking about are in the $20,000 range and being a sole parent I needed help to buy the percussion vest for Sabrina. I asked around and once I found out the Australian government was not able to help with the cost I started a fundraiser on the Go Fund Me website.

Through the Go Fund Me account I posted a link to mine and Sabrina’s timelines on Facebook so we could share it with family and friends. That’s how I came into contact with a Social Media consultant and made an appointment to have a chat. After talking with him, we decided to make the Facebook page “Help Sabrina Breathe” and asked our family and friends to share the page to not only raise awareness of Cystic Fibrosis, but to also help with the fundraising. I also started sharing our page with other CF chat sites in the hope they would share.

Social media has been worthwhile in the way of raising awareness of Cystic Fibrosis and the treatments available in Australia compared to overseas. We got the word out there about CF but no donations coming in because as we found out it is very hard to get a donation of someone you don’t know.

SMSM: Was your fundraising successful? 

VZ: Through determination our fundraising was successful. We did not do any local fundraisers but we did do one in Brisbane at Rocklea Showgrounds in June at a car show. This event was organised by Evan Martin from CMC. Money-wise we only raised about $1,000 online and that was mainly through family and friends. We then received a $12,000 donation from a Smart City College initiative.

We were $7,000-short, but the Friendly Society Private Hospital came on board and helped out. They negotiated a price with Hill-Rom as they buy equipment through them regularly and they also gave Sabrina 15 weeks of physiotherapy at their hospital to teach Sabrina breathing techniques that will help loosen the mucus off her lungs (they don’t do this in the public hospitals), as well as securing Sabrina a 12-month membership with Simply Salt in Crofton Street (valued at $1500).

Using online methods have been good to raise awareness and we steadily grow in numbers with people following “Help Sabrina Breathe”. We educate people about CF and the treatments available.

SMSM: What are some of your approaches on social media that have helped Sabrina’s cause?

VZ: We have had a lot of views lately since Sabrina started using the salt rooms and her gym sessions are posted on her page regularly. We have had messages asking about the salt room and how it works to also getting messages that Sabrina inspires other people by her dedication in staying fit and doing the treatments she has to do to stay healthy. People that have messaged us on advice on how to go about fundraising and we told them what we did and to not to give up. We hit a stalemate for a few weeks, but in the end we got what we wanted to achieve.

Sabrina is now the healthiest I have seen her in her 17 years of dealing and suffering from Cystic Fibrosis.

SMSM: What are you using the “Help Sabrina Breathe” Facebook page now?

VZ: We are using “Help Sabrina Breathe” to further raise awareness of Cystic Fibrosis and the treatments available. We are there to listen to people’s problems and concerns, and try to help them if we can. We are also raising awareness of the new drugs Kalydeco and Lumacaftor as this combination of drugs will greatly help Sabrina with her lung function and weight gain but comes at a cost of over $300,000 a year because the Australian government will not subsidise it and put it on the PBS list like most other countries have. This treatment adds an average of 18 years on the life expectancy of a person with CF.

SMSM: What is next for you and Sabrina?

VZ: To keep raising awareness of Cystic Fibrosis and the treatments available in Australia compared to other developed countries in the world. To keep our followers up to date on Sabrina and her battles with Cystic Fibrosis and to fight and raise awareness until CF no longer stands for Cystic Fibrosis but CF will stand for Cure Found.

We will keep raising awareness and we are now lobbying the Health Minister Peter Dutton and the Australian Government to put a new wonder drug “Kalydeco” on the PBS list. Other western developed countries have it readily available for their CF citizens but in Australia it has been approved but is not subsidised and it comes with a cost of over $300,000 a year. Sabrina needs Kalydeco in combination with Lumacaftor for her to live her life as normal as possible without the need for hospital admission, antibiotics, weight supplements etc. This drug is not a cure yet but we are getting closer to finding the cure for Cystic Fibrosis.

I would like to see everybody with Cystic Fibrosis in Australia to benefit from this new Kalydeco treatment, and they will as soon as it has been approved by the government to go onto the PBS list. Unfortunately our government has known about this for about 2 years but they still have not approved it to go onto the PBS list because they say the drug is too expensive. My next move is to try and raise money so Sabrina can use this treatment. I have written to the drug company that makes it to see if we can get it on compassionate grounds or at a reduced cost but this is a long process. Like with the percussion vest which is non-existent in Australia, it is up to the parents or my case the parent to try and give your child/children the best chance in life possible. For Sabrina to live life to the fullest until a cure is found for Cystic Fibrosis. I do not make any excuses to want the best for Sabrina as any parent would want the best for their child/children, but as is in the case with Cystic Fibrosis the parents really need to get involved to keep their kids healthy.

SMSM: Sabrina’s top tips for using Social Media for fundraising and raising awareness?

VZ: Sabrina says to post updates regularly, like every day if possible and do photo updates every second day as they get the most views. The views also depend on the photos and the comment that goes with the photos.

Vincent and Sabrina would like to thank the following:

• Noel Gallagher (played for Bundaberg Brothers, Cronulla Sharks and represented Australia in rugby league and is a pastor now)
• Peter Sawyer (board of directors at The Friendly Society Private Hospital)
• Dan Willersdorf (Wide Reach Social Media)
• Kathy Goleby (local nurse who has always supported us)
• Doctors, nurses and staff from the children’s ward at the Bundaberg Base Hospital
• Craig Carson (Blooms the chemist at Sugarland)
• Billy Healy (Local 4BU radio station)
• Ross Gray (Ross Gray Motor City)
• Evan Martin (Car Mad Club)
• Tammy Vaughan (former manager of Spotlight)
• Smart City College
• Stuart Bonnet (and the team at The Friendly Society Private Hospital)
• Simply Salt (salt rooms in Bundaberg)