In Memoriam – Tali Rom

The development of John Knight’s first book: “The Impossible Earth” was impacted both positively and negatively by various factors.

The untimely passing of a pure soul who was a dear friend of John’s, months before her 29th birthday, led him into an emotional tailspin that could not have been foreseen.

Without the creative triggers to write a poem or passage that would be a fitting tribute to the dear departed, John decided instead to make his first book one that was dedicated to her memory, with a majority of the royalties to be donated to a research charity for Fanconi Anemia; a rare blood disorder that she was born with, which may have shortened her lifespan.

R.I.P.  TALI ROM

September 9, 1986 – April 6, 2015


 

UNDERSTANDING FANCONI ANEMIA

WHAT IS FANCONI ANEMIA?

Fanconi Anemia is a disease passed down through families (inherited) that mainly affects the bone marrow. It results in decreased production of all types of blood cells.

Fanconi Anemia is different from Fanconi Syndrome, a rare kidney disorder.

CAUSES

Fanconi Anemia is the result of an abnormal gene that damages cells, which keeps them from repairing damaged DNA. To inherit Fanconi Anemia, a person must get 1 copy of the abnormal gene from each parent. The condition is most often diagnosed in children between 2 and 15 years old.

SYMPTOMS

People with Fanconi Anemia have lower-than-normal numbers of white blood cells, red blood cells, and platelets (cells that help the blood clot).

A reduction of white blood cells can lead to infections. A reduction of red blood cells may result in fatigue. A lower-than-normal platelet count may lead to excess bleeding.

Most people with Fanconi Anemia exhibit some of the following symptoms:

  • Abnormal heart, lungs, and digestive tract.
  • Bone problems (especially the hips, spine, or ribs; can cause a curved spine (scoliosis).
  • Changes in the colour of the skin, such as darkened areas called cafe au lait spots and vitiligo.
  • Deafness due to abnormal ears.
  • Eye or eyelid problems.
  • Kidney(s) that did not form correctly.
  • Problems with the arms and hands, such as missing, extra or misshapen thumbs, problems of the hands and the bone in the lower arm, and small or missing bone in the forearm.
  • Short height.
  • Small head.
  • Small testicles or genital changes.

OTHER POSSIBLE SYMPTOMS:

  • Failure to thrive.
  • Learning disability.
  • Low birth weight.
  • Intellectual disability.

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