Haven's Hope

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Haven is a 2-year-old warrior princess. The past 12 months have proven to be a battle for survival and although Haven has emerged victorious she has not remained unscathed. In March 2018, a week after Haven turned one, she woke and was unable to move the right side of her body. We took her to the children's hospital where they ran numerous tests on her. They discovered that her haemoglobin level was 3 (critical). Her level was so low that the doctors were amazed that Haven was still alive. An MRI soon revealed that Haven had a suffered from a watershed stroke. This was a result of her haemoglobin level being so low that it had drastically reduced the oxygen to the brain. Tragically, the aftermath of her stroke has left Haven with hemiplegia dyskinetic cerebral palsy.

Haven's bone marrow was then sent to a genetic clinic for testing. The results showed that Haven suffers from an extremely rare blood disorder known as Diamond Blackfan Anemia (DBA). This condition is caused by a mutated gene called RPS19. DBA is extremely rare with approximately 800 people in the world that have it. Although there are medical treatments available for those suffering from DBA, there is, unfortunately, no official cure for it. DBA is classed as bone marrow failure which means that Haven cannot make red blood cells. Therefore, Haven relies on blood transfusions every 3 - 4 weeks to stay alive.

Sadly, iron overload is an unfortunate downside to these life-saving blood transfusions. Apart from cancer, iron overload is one of the biggest causes of fatalities for those with DBA. Every transfusion Haven receives gives her 250 milligrams of iron. Generally, a person only needs 1 milligram of iron a day. The human body cannot remove excess iron so when there is an overload, iron deposits can form on the liver and heart. The only way to help with the iron overload, unfortunately, is a treatment called chelation. However, the effectiveness of chelation relies on the doctors' ability to accurately monitor the iron deposits and adjust treatment accordingly.

As Haven's parents, we want her to enjoy a full, happy, and relatively normal life. Although we hope and pray that Haven will be able to overcome DBA, DBA may very well be a lifelong battle.

Words cannot possibly describe how grateful we are for your generosity. As inadequate as a simple yet heart-felt "Thank you!" seems, this is all we can say.