Inspired by the ancient African proverb that “It takes a Village to raise a Child”, and to honour Natalie’s legacy of love, the circle of love community continues to grow and evolve. Natalie’s Circle of Love Trust supports advocacy for children’s palliative care and families impacted by Rare Diseases in South Africa.
As a tribute to Natalie on what would have been her 16th birthday on April 28th, we are proud to announce the launch of our Circle of Love Bracelets. Worn for their loveliness and to show support and solidarity for families impacted by Rare Diseases, bracelets are available in boxes of 25 in either turquoise or teal.
Circle of Love bracelets are produced as part of an job creation program developed by social enterprise, Relate who donate a third of sale of each bracelet to NPO, Rare Diseases South Africa. Its no problem to ship your order anywhere in the world, simply email me and I’ll mail you the order form.
This site was established in January 2011 to support Natalie (10) after she was diagnosed with a rare form of spine cancer called Chordoma. Chordoma is a rare and life-threatening condition affecting some 8 per million, or 1 in 125,000 people and the devastating news came out of the blue. Doctors in South Africa offered little hope, so we searched the globe for help and thankfully discovered the Harris Centre for Chordoma in Boston. Experts in this niche area of medicine were willing and and helped make it possible for Natalie to receive treatment at Mass General Hospital that we all hoped would extended Natalie’s life.
Thanks to support from family, friends, and kind souls who reached out to help, Natalie arrived safely in Boston and immediately began proton radiation treatment. After ground-breaking surgeries Natalie quite literally had a backbone of steel. Doctors had successfully removed 7 vertebrae and reconstructed her spine using a titanium cage and healthy bone grafted from her right leg. Recovery was tough, especially the 3 challenging months in a halo brace, re-learning to sit, stand and walk. There were victories, complications and set-backs but Natalie pushed hard and after 7 long months in Boston, she was declared Chordoma free and returned to Cape Town to continue her recovery at home.
By January 2012, Natalie was thrilled to return to school. But time with her class mates was short-lived and a few months later, scans showed signs of recurrence. Natalie returned to Boston for further treatment, and though her devoted team in Boston did all that they could, it was not possible to completely remove the new Chordoma tumours. Natalie had a hard time after surgery remained in the paediatric ICU with respiratory support for 3 months before Eventually she was strong enough to travel and after an emotional farewell to our Boston family & friends, returned to Cape Town. Back home, Natalie continued to recover from her last surgery and slowly regained her strength.
In South Africa, there is no support from the State for children in need of palliative care and few resources available to families even in private practice. Thankfully Cape Town based Dr Michelle Meiring, one of a handful of children’s palliative care specialist in the country, agreed to support Natalie. She worked closely with us so that Natalie was able to remain at home, working relentlessly to manage pain and controlling symptoms, so that Natalie could enjoy the optimal possible quality of life.
Over the following year, Natalie lived a full and creative life, filled with precious family time. She relished being in nature, loved to cuddle with her ever-loyal rescue dog, Princess Joey and spent many happy hours making art with her friends. Natalie was very proud to become a teen and on April 28th 2013, she celebrate her 13th birthday with a stylish Coming of Age party with close family.
But in the months that followed, Natalie’s health declined. Some days were difficult and that Natalie was smart, self-aware, and articulate, made it easier for us to provide the care she needed. She was remarkably resilient, with a wickedly dark sense of humour and even through her end days, there was much laughter, silliness and fun with friends and family.
She could be serious, and was observant and thoughtful, working to make sense of her experiences and she accepted that her life would be short with grace and with maturity way beyond her years. But there were some things that she simply could not accept and even now her words ring in my head.
“Mom, how can it be that I am lucky to have access to pain medication? All sick kids need meds enough to control pain.”
Natalie was 13 when she gained her angel wings on November 13th, 2013. She was at home, surrounded by her family and she died as she lived, with immense courage, dignity, grace and trust. Though a cure was not possible Natalie was healed by the outpouring of love and support from her Circle of Love.
Thank you for your continued love and support for our family as we grieve Natalie and now also her beloved cousin, our precious Jenna, who was diagnosed in 2012 with Pulmonary Hypertension, a rare condition affecting her lungs. Read beautiful tributes for Jenna and learn more the work now being done in her name at www.jennalowe.org
We honour all we have learned from Natalie and Jenna by helping families with sick kids and those living with Rare Diseases in South Africa.
With much love and gratitude,
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