We’ve recently arrived home from a wonderfully relaxed 2 weeks in Plettenberg Bay. I do love it there! We – my family and my boyfriend, Daniel – stayed in a lovely secluded spot, between Plett and Keurbooms, which was SO generously given to us by a beloved friend of my mom. All I did was eat and sleep and occasionally socialise. It was fabulous, as always to catch up with my amazingly fun, supportive and compassionate Plett friends, who never make a big deal about carrying me across a beach or up the street to local restaurants. I admit, I did absolutely nothing constructive. Poor Daniel probably worked the hardest in Plett, as our house was up a long flight of stairs, which he invariably carried me up. Kristi did try once… a venture which resulted in us collapsed, giggling hysterically, in a pile at the top of the staircase. It was a time of rejuvenation that the family desperately needed after a hectic and draining term.
Not a completely negative term though. On the last day of school Kristi and I did a Herschel song-launch. I spoke, and she sang. It was such a wonderful opportunity to speak to all the incredible girls and staff. I could not be more grateful for their support. As I said that day, Herschel has allowed me the life and opportunities that I thought I would have to give up. I am too fatigued to handle a full school day the majority of the time but instead of pressurizing me, my school community has allowed me to rest when I need to, whilst still including me so that I can keep up with matric.
Everyone was so kind, so astoundingly supportive of our song and our campaign. Herschel girls… I cannot thank you enough. It has been a privilege to grow up among such motivated, intelligent and loving young women.
I was also super relieved to get my report back. If you read my “Drugs and Exams” post you will understand – I was really under a lot of physical and emotional strain during exam time and had very very little time to do any studying. To be honest, I was really quite apprehensive about my results! But I have got them back and I’m content. Maintained my 8 As this term, so thank goodness my dream of UCT has not been ruined! I have been made a conditional offer for a BcomPPE, which was my second choice. Hopefully I will be able to get in for my first choice – BSocSci Philosophy, Psychology and History.
Term starts again on the 15th of July. In the meantime I have quite a few projects to work on, but also, some really exciting media features!
I am in the July issue of Cosmopolitan magazine, which was fun. I did a shoot for them a while back… some of the photographs on this website actually come from that shoot. Anyway, after the beauty shoot, Cosmo heard about our campaign and have very kindly included my story in their editors letter! Yay!
The Jenna Lowe Trust has been featured in the Cape Argus , and the Star, with an article about Kristi singing “I Need More Time” to help me. We also appeared a wonderful article on medication and rare diseases in the Weekend Argus, the Star and on IOL news ( http://www.iol.co.za/news/south-africa/gauteng/rare-illness-makes-life-a-struggle-1.1543148 ). There are scans of these articles on the “News and Events” page. My family and I will also be appearing in Good Housekeeping magazine, if anyone is interested.
So have a look at those publications if you can! Kristi was particularly shocked and thrilled to have been recognised a couple times by complete strangers in Plett!
We are starting to get some momentum in fulfilling my main goals with this trust fund – to raise awareness for Pulmonary Hypertension – so that people are diagnosed correctly and in time, to pressure international drug companies to register their life-saving drugs in this country, and of course to get some funds to pay for the drugs which are prolonging my life.
Of course, the biggest part of our campaign, which is fully explained on the page headed “Kristi sings for Jenna” is the song, “I Need More Time.” KFM launched the song a couple weeks back and it shot to number 3 on the SA Itunes Downloads chart in one day! Super exciting. KFM has been immensely kind to us, and it’s been such fun and such an honour to be working with them! I’m not going to blog about that story, because it is fully covered on the “News and Events” page of this site – with a YouTube Clip of the story behind the song, and a podcast. PLEASE have a look if you haven’t already. Kristi, Mom, Dad and I have poured all of of love and energy into this!
I have also been networking internationally. I’m in touch with other PH patients, both locally and abroad and with the Pulmonary Hypertension Association (PHA) who do incredible work all over the world by supporting and educating patients. It’s great to be able to talk to other people with PH… they understand what everyday life is like.
I’ve also been in contact with Kelly du Plessis from the Rare Disease Society of South Africa… what a fabulous woman! I am now the Pulmonary Hypertension ambassador for her organisation. If a patient comes to them with PH, she will refer them to me and I will help in any way I can.
Finally I feel like I am starting to help people and make a difference!