December Charitea: Maddie Riewoldt’s Vision

Following the tragic death of Maddie Riewoldt on 24th February 2015, Maddie Riewoldt’s Vision was founded by the Riewoldt family in June 2015 to help to find new treatments for Bone Marrow Failure.

Following the tragic death of Maddie Riewoldt on 24th February 2015, Maddie Riewoldt’s Vision was founded by the Riewoldt family in June 2015. In collaboration with the Snowdome Foundation (an NFP that funds research into new treatments for blood cancers), Maddie Riewoldt’s Visions aims to raise funds to #fightlikemaddie and find new treatments for Bone Marrow Failure. The Vision aims to ultimately find a cure for the syndromes that affect younger Australians each year. Maddie Riewoldt lived with Aplastic Anaemia for 5 years and passed away at only 26 years of age.

Hating that this illness could control her life, she sought out to fight the illness and enjoy everything life had to offer, hence #fightlikemaddie was born.

For 5 long years Maddie fought this disease bravely. Everyone around her was amazed at how she would fight and the depths of her resilience. And because of this, we always thought she would beat it.

In the end, when Maddie knew her fight was ending, she just wanted to make sure her suffering would make a difference. Maddie Riewoldt’s Vision is that difference. Our organisation has been created to support the understanding of Bone Marrow Failure Syndromes and to help those suffering from the disease and continue towards our ultimate goal – finding the cure.

Maddie fought her battle with inspiring determination and courage. It’s now up to us to put our heads down and lift our hearts and #FightLikeMaddieMaddie Riewoldt’s Vision has been established to help adolescents and young adults suffering from Bone Marrow Failure Syndromes through research and providing support for treatments, prevention and with an aim to finding a cure.

MRV Header

THE DETAILS ON BMFS

What is bone marrow?

Bone marrow is an important and complex organ, and quite literally, the body’s factory for blood cells. Healthy bone marrow works to produce new red and white blood cells and platelets every single day. When bone marrow stops working, our bodies become unable to keep up with the constant demand for the new blood cells that the body needs.

What is Bone Marrow Failure Syndrome?

  • BMFS is a collection of medical conditions where the bone marrow stops working – resulting in abnormalities of the blood including severe anaemia, increased risk of severe infections, and bleeding.
  • All BMFS are due to a failure of the bone marrow stem cells.
  • BMFS may be acquired (affecting a previously normal marrow) or inherited.
  • BMFS occurs when the bone marrow cells have been damaged or have been attacked by the immune system.

What is Aplastic Anaemia?

  • Aplastic anaemia is a disease of the bone marrow and is classified as a Bone Marrow Failure Syndrome.
  • Aplastic anaemia is when the bone marrow stops making enough red blood cells, white blood cells and platelets for the body.

Types of BMFS:

  • Acquired BMFS include aplastic anaemia, myelodysplasia (MDS) and paroxysmal haemoglobinuria (PNH).
  • Inherited BMFS include a range of severe and progressive diseases that often worsen in early adulthood.

How is BMFS treated?

  • Transfusions for low red cells or platelets.
  • Antibiotics for infections.
  • Some types of BMFS (aplastic anaemia) can be treated with immune suppression.
  • Some types of BMFS need to be treated with bone marrow transplantation.

Quick facts:

  • Aplastic anaemia is most common in ages 15-25
  • Up to 5 people per million globally are diagnosed each year with BMFS
  • Each year up to 140 Aussies are diagnosed with BMFS

Read more about Maddie Riewoldt’s Vision at https://www.mrv.org.au/

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