Olive became critically ill at seven weeks of age due to an unexpected and severe anaemia. That was the start of the journey to diagnosing her with Diamond-Blackfan Anaemia, a rare genetic disorder which results in bone marrow failure, early onset cancers and congenital abnormalities. She has endured multiple invasive investigations, including a bone marrow biopsy, and in her six months of life has spent more time in hospital than your average adult! With some of the tests only available overseas, it took some months time to get to the bottom of her illness.
With a confirmed diagnosis she is now transfusion dependent, meaning she will need to receive blood transfusions every month until at least one year of age - but possibly for life. Diamond Blackfan Anemia has NO CURE. Stem cell transplants have the ability to cure the bone marrow failure, relieving them of the need for steroids or blood products, and so preventing the complications which often lead to death in children with this disorder.
She is also neutropenic (has a low white cell count) and has an immunoglobulin deficiency, which makes her particularly vulnerable to infections.
Between transfusions, she has had several hospital admissions for
septicaemia. This immune deficiency has created the need for strict
infection prevention at home which comes with its own practical difficulties and expenses, as well as a lot of isolation!
Her parents have identified the lack of support and expertise available in South Africa (and the rest of Africa) for this specific disorder and others like it. They have decided to set up a foundation - The Olive Children's Foundation - which serves to support Olive and other children with similar conditions with up to date management protocols that meet international standards of care.
Initial fundraising efforts are primarily aimed at helping to get this foundation off the ground, but any funds raised will be used in the following ways
· To assist in covering medical bills for Olive personally in circumstances not covered by our medical aid - particularly with a view to saving for a stem cell transplant which is astronomically expensive!
· To aid other families of children with DBA with financial shortfalls related to investigations and treatment
· To aid the DBA Africa Registry (another initiative started by Olive's parents) in contributing to research in this field, and keeping heath care providers up to date about current breakthroughs and principles of management
· To cover costs associated with start up of a paediatric day infusion centre, where children who require chronic intravenous therapies and blood transfusions can be attended to in a non-threatening and supportive environment
For more information please visit the websites:
Or email us: email@example.com
The journey of having a sick baby is scary and absolutely dreadful, and we would not wish it upon anyone, but it has brought to us a hugely overwhelming amount of love and support. We have been acutely reminded every day of how much we rely on our families, friends and total strangers in our communities and around the world to lighten
the load that we are currently bearing. It has been humbling to say the
least, and we are eternally grateful to everyone who has made contributions of prayer, meals, financial support, advice, blood donations and more. We hope that through the Olive Children's Foundation we can find a way to give all of that back, and more, to others in similar situations, and to help these children live their best possible lives.