Isabella's Medical Fund

Hello friends, family and visitors,

As some of you may or may not know, our daughter Isabella has had quite a journey in her 4 short years of life.

Isabella was born with a very rare genetic disorder called ASA (argininosuccinic aciduria), a form of a urea cycle disorder (UCD).

A urea cycle disorder is a genetic disorder caused by a mutation that results in a deficiency of one of the six enzymes in the urea cycle. These enzymes are responsible for removing ammonia from the blood stream. The urea cycle involves a series of biochemical steps in which nitrogen, a waste product of protein metabolism, is removed from the blood and converted to a compound called urea in the blood. Normally, the urea is transferred into the urine and removed from the body. In urea cycle disorders, the nitrogen accumulates in the form of ammonia, a highly toxic substance, resulting in hyperammonemia (elevated blood ammonia). Ammonia then reaches the brain through the blood, where it can cause irreversible brain damage, coma and/or death.

Isabella was diagnosed with this chronic disease 4 days after birth. She fell into a coma and underwent kidney dialysis to keep her alive.  Due to the time sensitive situation, unfortunately, the aggressive measures taken resulted in her having a heart attack.  It took 1 1/2 minutes to resuscitate her during which the lack of oxygen caused several strokes.  

In the chaotic fog of fear and confusion, Mandy and I were offered and accepted  an experimental procedure.  To literally freeze our newborn girl to stop the flow of the unimaginable level (888) of toxic ammonia that had poisoned her brain.  She would, in fact, be the sixth person to have undergone such treatment.  To put it in perspective, the average person has an ammonia level at any time no higher then 50.

Ultimately, faced with no other alternatives, Isabella underwent a complex liver transplant on July 6, 2014 at Georgetown University Hospital in Washington DC.  This does not rid of her chronic disease, however, heightens her chances of a better quality of life. With this "new" liver, comes a whole new set of lifelong upkeep that is crucial for her functionality.  Daily medications, doctors visits, blood draws and testing, to name a few, are some of Isabella's protocol.

Today, at almost (April 17th) 5 years old, she is a beautiful, funny and inquisitive little girl with so much to give. She has social -emotional, physical,  gross and fine motor skills delays that, hopefully, in time, will improve. Though she cannot talk, we yearn for the day that she is able to speak to us.

Isabella's story is long and complicated with countless close calls. Our journey as a family has tested the highest form of endurance. Together, on a daily basis, we never forget our fortune of having Isabella with us.

I, as a proud father of 2 girls and the sole provider of the family, have wrestled with the financial aspects of our reality.  Though I am truly blessed to have the career that I have and love with Interstate International Inc. for the past 7 years, I have had to seek outside means. Quite candidly, as all my cards are on the table, I have taken second and third side jobs to try and make ends meet. With that said, not once, ever, have I given a second thought to why I had to. 

Though insured through my employer, Isabella's diverse medical care has never been fully covered. 

Creating this campaign and utilizing the GoFundMe or any other various funding resources was never an option for me.  After 4 plus long years, I sit here writing about Isabella and her life and I have, for the most part, placed my pride aside. 

I humbly reach each out to all of you for assistance to help with the daily regime of Isabella and her medical care.

From the heart, though we have set a monetary goal, just continuing with spreading the word about UCD and raising awareness through "Izzy's" story is an irreplaceable accomplishment in itself.

From our family to yours,
thank you for reading our story,
hug, kiss and love your children, they're true gifts.

Derek, Mandy, Josie & Isabella (Izzy)
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Derek Lackey
Germantown, MD

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