In the spring of 2018, Isabel “The Incredible” Dabrowski was diagnosed with an ultra rare blood disorder known as Hereditary Thrombotic Thrombocytopenic  Purpura (hTTP). Not only does she have TTP,  but she also has the rarest form which is called “familial” or “hereditary”. Just to keep things interesting, Isabel is also the first known case with her combination of mutations.

hTTP is characterized by many small clots that form in the small vessels of the body, as well as destroying red blood cells and lowering her platelets during each episode. These blood clots can cause serious medical problems if they block vessels and restrict blood flow to major organs such as the brain, kidneys and heart. Anytime there is delayed treatment it can lead to irreversible complications from heart attack, stroke, kidney failure and death. Isabel's blood levels are check regularly to ensure her major organs are functioning properly and any sign of deterioration is caught early. The disorder causes red blood cells to break down prematurely, as the blood squeezes past clots within blood vessels, red blood cells are torn apart; a condition known as hemolytic anemia. Isabel suffers from Iron Deficiency Anemia as well. This means Isabel’s red blood cells are destroyed faster than her body can replace them. This type of anemia leads to yellowing of eyes and skin (jaundice) paleness, fatigue, shortness of breath and rapid heart rate. 

20% of patients that relapse with a TTP episode do not survive. Isabel has relapsed 22 times(and counting) since birth. At 3 1/2 years old this is a testament to Isabel’s persistence and strong-will, she has battled her way back to a healthy state after each relapse. It is unknown when the next episode will strike, which is a reality that Isabel, her mother, Carly, and father, Taylor, and her baby brother Kade will face for the rest of their lives. 

Since being diagnosed with hTTP, Isabel had a port placed under her left collar bone with a catheter that sits just inside her heart. Izzy has gone from receiving plasma infusions every 2-3 weeks to prevent recurring episodes to receiving Koate-DVI two times per week. This allows her to live a somewhat “normal” life as a busy pre-schooler. (Never a dull moment for her parents, that’s for sure!). With the upcoming 'flu' season on top of the current Pandemic, we may see her doses increase to protect her.

Isabel has also been placed on The National Hereditary TTP Registry. The registry builds a network allowing patients and families a platform to exchange experiences on therapy, the occurrence of side-effects and their treatments and long-term progress, thereby improving treatment and aiding prevention for patients. 

Until then, it will be a treacherous waiting game and that’s why we need your support. More children will be diagnosed with this Ultra-Rare Disorder and more will die. By visiting our website and purchasing, you are making a donation that will help us to raise funds for much needed research, education, and patient support to help ease treatment and ultimately find a cure for TTP.

 

TTP is too rare to make it economical for pharmaceutical companies to fund specialized TTP research. Your donation makes our fight possible. Our efforts will help to speed early detection of a TTP crisis. Without treatment 95% of TTP patients die.

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