“This is what hereditary TTP looks like. Not eating for days, fevers flirting with 104, sicknesses that strike from one hour to the next. Spending more days in the hospital than at school with her friends, worrying about every nap, bruise and cough and putting her through the ‘works’ each time, pokes, IVs, catheters, X-ray and monitors. We tend to post the pleasant pictures, the silly ones making light of a transfusion day or an ER visit but reality is 5 out of 7 days are spent running though our medical checklists, wondering if it is safe for her to go somewhere or making phone calls back and forth with doctors.”
-Carly & Taylor Dabrowski
In the spring of 2018, Isabel “The Icredible” Dabrowski was diagnosed with an ultra rare blood disorder known as Thrombotic thrombocytopenic purpura (TTP). 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.
TTP is characterized by many small clots that can 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 organs such as the brain, kidneys and heart. The disorder also causes red blood cells to break down prematurely. As blood squeezes past clots within blood vessels, red blood cells can break apart; a condition known as hemolytic anemia. 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 5 times since birth over the span of 18 months. 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, will face for the rest of their lives.
Since being diagnosed with hTTP, Isabel had a port placed just above her heart and receives plasma infusions every 2-3 weeks to prevent recurring episodes and allows her to live a somewhat “normal” life as a busy toddler. (Never a dull moment for her parents, that’s for sure!)
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 treaterous waiting game and that’s why we need your support.
Our families have always come together to support one another during challenging times, but there is only so much we can do on our own. The costs of dealing with hTTP, medical bills, traveling, lodging, missing work and a million other things is very daunting. We are asking for support from our friends and extended families to help alleviate some of the financial burden that Carly and Taylor will face. Anyone who knows Carly and Taylor know they exude generosity and kindness and would do anything for anyone, whether a stranger or a lifelong friend. Your donation of any amount is greatly appreciated.
In addition, we remind everyone the importance of blood donation. When you give blood, you give the gift of life.
Your love for “Isabel The Incredible” does not go unnoticed and we thank each of you for your constant prayers and support.
Fight on, Izzy, Fight On!
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