FA Family Newsletter - Fanconi Anemia Research Fund

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At Last, Success!By Holly MirendaFamily NewsOur family welcomed Georgia Elizabeth Mirendainto the world at 12:01 a.m. on June 26, 2011, afteronly 16 minutes in the hospital. While her deliverywas expeditious, we had been awaiting Gigi’s arrival forseveral years.We’ve been blessed with many things in our livestogether, including wonderfully happy children, anincredibly supportive and loving family, and exceptionalmedical care. It’s clear now that we were also blessedwith patience. We began our in vitro fertilization/preimplantationgenetic diagnosis (IVF/PGD) journey infall 2008 and ultimately completed nine rounds beforebecoming pregnant in October 2010.When we first learned about the possibility of preselectinga healthy embryo and a human leukocyteantigens (HLA) match through IVF/PGD, we knewimmediately that this would be our path forward forour family and for our daughter Sofia’s health (Sofiahas FA). Even with this absolute conviction, however,our patience, reasoning and emotional strength werethoroughly tested: the seemingly endless hours on theroad for appointments, two lost early pregnancies, andthe many times we arrived at the clinic, hopeful for anembryo transfer—and left brokenhearted.Having two young kids, Sofia and Teddy, at homewhile facing this challenge helped to keep us focused,and, well, busy. It also complicated family discussionsabout health. Looking back, it was Teddy’s anxietyabout Mommy’s health that was perhaps the toughestemotional part of our process. He was obviously tooyoung to grasp the entire situation, but old enoughto notice Mommy’s absences, moods and shots. Weexplained the shots by saying that families sometimesneed a little medicine to help make babies. (A funnyside story was when Teddy told a friend that babies aremade by mommies putting shots in their tummies.) Sofiawas young enough not to notice what was happening,except when Mom was gone before dawn on yet anotherround trip to see the doctors or too tired to read storiesat bedtime.Nothing was easy about the process. Much like thekid’s game Chutes and Ladders, it seemed that every timewe climbed higher, we hit a point where we’d slide down,and sometimes off the game board. Deep down, wetrusted that someday we would be made whole.We’re now witness to the love and joy that patienceand faith has brought to our family. Baby Gigi is notaffected by FA, although she is a carrier like we are. Sheis also an HLA match for Sofia. We collected and storedher cord blood at birth, to be used when Sofia needs atransplant.Much like the kid’s game Chutesand Ladders, it seemed that everytime we climbed higher, we hit apoint where we’d slide down, andsometimes off the game board.Throughout the physical and emotional rollercoaster,we kept faith in Sofia’s ability to remain healthy, as wellas in our amazing team of nurses, doctors and geneticists.We have to take the opportunity to sing the praisesof CNY Fertility and Dr. Mark Hughes at GenesisGenetics. The care, faith and comfort that they extendedto us were as important as the science that helped bringus baby Gigi.Sofia is now 6, beautiful, and has an energy that thrillsus every single day. She and Teddy (8) are completelysmitten with Gigi. Now that Gigi is starting to smile, weknow that the feeling is mutual.14 Family Newsletter #50
The Sum of All Fears: A Single Mom’s JourneyThrough Fanconi AnemiaBy Simone KiezeI’ve learned thatbeing a single parentin the Fanconianemia populationis extremely rare. Ican’t say I was elatedto fall into eitherstatistical category, butthe moment my son,Mekhi, was diagnosed,I knew our path on this Earth would be different.I remember the day my husband left us. Mekhi wasa year old. I was overcome with fear that I didn’t havewhat it takes to raise a man alone in today’s society.I was at the pinnacle of my accounting career at alarge accounting firm with only my family as support.Determined to make it, since failure was not an option, Iquickly adopted the attitude “other single moms did thisbefore me; I can get it done!” Then I lost my job. I feltthat 2-year-old Mekhi understood everything I was goingthrough. I had to pull it together for him, if no one else.While unemployed, I decided to continue my studiesfor the Certified Public Accountant examination. Mekhistayed perched on my hip as I toiled through accountingproblems at night; his job was to keep me awake. Andhe did such a great job! Eventually, I passed the exam,got a job and qualified for insurance. When I was finallyable to take Mekhi for his first check-up in over a year,his platelet count was 25,000. One month later he wasdiagnosed with Fanconi anemia. That was the straw thatbroke this camel’s back. Losing my husband, my joband getting this diagnosis in the span of one year feltlike someone tied my heart to a 10-ton brick and threwit into the ocean as shark bait. I couldn’t even begin toprocess what lessons I could possibly learn from theseexperiences. It just wasn’t fair. There are many things inlife I braced myself for as a single mom: talking aboutsex, love, marriage… but having to tell my child that hehas a preleukemic disorder was definitely not on the topof my list. I was devastated. Having no one to help mewith that discussion added to the frustration.Through all that’s happened I’ve learned that there aresome things that one should not attempt to go throughalone. The independent spirit I once prided myself onhad to be thrown out the window. My thinking had tochange; my attitude needed to change; I needed to be adifferent type of mom to my son to get us both through.The first thing I had to do was admit that I neededhelp. I sought the best therapist I could find. I lateradopted these three basic principles that have helped meimmensely:• Every life has a purpose. Discovering that purposeand going along life’s intended path will alloweverything to align and will take you to the nextlevel. While being a member of the FA family wassomething I never thought would happen to me in amillion years, I’m elated to be involved.• Where I am now is exactly where I should be.Nothing happens by chance or coincidence. Thereare no mistakes on this journey, only opportunitiesto learn. Every person I’ve met along this pathhas been brought into our lives for a reason; everydoctor, every nurse and friend has touched our livesin some way and we’ve learned to appreciate it.Within this past year, we’ve been able to open theeyes of the Caribbean community to FA and theimportance of being a donor. None of this wouldhave happened without Mekhi.• Love. Love. Love. Teaching Mekhi to love and accepteverything around him has become important to me.Just appreciating the simple pleasures of the breezebrushing across our faces, the sound of the ocean andaccepting everything nature has to offer us brings agreat level of peace to our lives.Through all that’s happened I’velearned that there are some thingsthat one should not attempt to gothrough alone.Life is short. Nothing should be taken for granted and,if our destiny is that I should outlive my son, I want toknow that every minute and second of every day spentwith him was meaningful.Family NewsFamily Newsletter #50 15
Page 3 and 4: Early Gynecological Care is Essenti
Page 5 and 6: Plans Under Way to Study FA Parenta
Page 7 and 8: Psychological/Social Issues Affect
Page 9 and 10: Minnesota Reports on Transplant Out
Page 11 and 12: Living with Fanconi AnemiaBy Mary G
Page 13: A FANTABULOUS Experience for FA Fam
Page 17 and 18: Kids from FA Families Pitch in to R
Page 19 and 20: Everything Old is New AgainBy Jeann
Page 21 and 22: Door to Door SuccessJack Timperley,
Page 23 and 24: Researchers and Clinicians to Conve

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