National Neutropenia Network

Awareness, Education, Research

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Medical Specialists

This page contains background and specialty information on a number of individuals working to understand and find ways to alleviate Neutropenia. You are encouraged to reach them if you or someone you love has or may have neutropenia. These videos were recorded at the Neutropenia Family Conference in San Diego in 2010.

PETER NEWBURGER, MD

Vice Chair of Pediatrics, Hematology/Oncology, Professor, University of Massachusetts Medical School; SCNIR Board Member

Peter E. Newburger, MD, is the vice chair of pediatrics and director of the Division of Pediatric Hematology and Oncology at the University of Massachusetts Medical School. He also serves as professor of Pediatrics and Molecular GeneticsMicrobiology and professor of Pediatrics and Cancer Biology at University of Massachusetts Medical School and Graduate School of Biomedical Sciences. Dr. Newburger serves on the scientific advisory board and executive committee of the Severe Chronic Neutropenia International Registry.

He holds numerous editorial positions including associate editor of Pediatric Blood and Cancer and until last year, section editor for the hematology/oncology section of the Current Opinion in Pediatrics. Dr. Newburger currently serves on the following editorial boards:

Hematology/Oncology Today, Journal of Pediatric Hematology/Oncology, Current Pediatric Reviews, Current Opinion in Pediatrics, and the American Journal of Hematology; and has served as manuscript reviewer for the last three years for: Am J Hematol, Blood, Br J Haematol, Cancer Res, Circulation, Eur J Hematol, Exper Hematol, Gene, J Biol Chem, J Cell Physiol, J Immunol, J Leukocyte Biol, J Pediatr Hematol Oncol, Mol Cell Biol, Pediatr Blood Cancer, PNAS.

Dr. Newburger’s research interests include molecular genetics of phagocyte function and development; molecular mechanisms of selenoprotein translation; and the biology and treatment of childhood malignancies. In 2005, Dr. Newburger received the Ali and John Pierce Endowed Chair in Pediatric Hematology/Oncology, and this year was recognized as a Castle Connolly Top Doctor.

University of Massachusetts School of Medicine
55 Lake Avenue North Worcester, MA 01655
Phone 508-334-4225
Fax 508-856-4282

DAVID C. DALE, MD

Professor of Medicine, Department of Medicine, University of Washington; Co-Director, Severe Chronic Neutropenia International Network

Dr Dale has been professor of medicine in the Department of Medicine at the University of Washington in Seattle for more than 25 years. He received a medical degree from Harvard University, residency training at Massachusetts General Hospital and the University of Washington, and served as a senior investigator with the National Institute of Allergy and Infectious Diseases’ Laboratory of Clinical Investigation at the National Institutes of Health in Bethesda, Maryland. Other past positions include serving as dean of the School of Medicine at the University of Washington.

Dr Dale is president-elect of the American College of Physicians (ACP) for 2006-2007, editor-in-chief of ACP Medicine, and an editorial board member of Clinical Advances in Hematology and Oncology and Journal of Experimental Hematology. His research interests center on neutrophil physiology, neutropenia, and hematopoietic growth factors, and he has published widely on these subjects in journals such as Supportive Cancer Therapy, Journal of Supportive Oncology, Drugs, Seminars in Oncology, Journal of Clinical Oncology, Blood and American Journal of Hematology. He has also written chapters and sections for the Merck Manual, Williams Hematology, Blood: Principles and Practice of Hematology, Clinical Hematology and ACP Medicine 2006.

Dr. Dale currently serves on the National Board of Sponsors for Physicians for Social Responsibility and is co-director of the Severe Chronic Neutropenia International Registry.

Phone 206-543-7215
Fax 206-685-4458
University of Washington Dept. of Medicine
Box 356422 Health Sciences Bldg., Room AA522 1959
NE Pacific Street

MARY ANN BONILLA, MD

Assistant Professor of Pediatrics; Pediatric Hematology/Oncology Specialist; St. Joseph’s Children’s Hospital; SCNIR Board Member

Mary Ann Bonilla, MD, graduated from Loyola University Stritch School of Medicine, Chicago, Illinois, in 1981. She completed a pediatric residency at Brookdale Medical Center, in N.Y. In 1984, she began her training in pediatric hematology/oncology at Memorial Sloan Kettering Cancer Center/Cornell New York Hospital. It was during her research years, that she joined Dr. Karl Welte’s laboratory. The preclinical studies of G-CSF (Neupogen) in chemotherapy-induced neutropenia were performed there in association with Dr. Richard O’Reilly. The G-CSF’s ability to induce increased neutrophils then led to clinical trials in patients with congenital neutropenia. She has participated with the Severe Chronic Neutropenia International Registry since it’s inception. Presently, she holds a faculty position at Columbia University and St. Joseph’s Children’s Hospital in Paterson, NJ. Primarily a clinician, she continues to follow many of the original group of SCN patients as well as practices general hematology/oncology. She lives with her family and pets in New Jersey.

Phone 973-754-3230
Fax 973-754-3331
St. Joseph s Children’s Hospital
Pediatric Hematology Oncology
703 Main Street
Paterson, NJ 07503

DAN LINK, MD

Professor of Medicine, Division of Oncology; Section, Bone Marrow Transplant; Assistant Professor of Pathology; Washington University School of Medicine

Phone 314-362-8771
Fax 314-362-9333
Washington University School of Medicine
Division of Bone Marrow Transplantation
660 South Euclid, Campus Box 8007
St. Louis, MO 63110

AKIKO SHIMAMURA, MD

Director, Bone Marrow Failure and Myelodysplastic Syndrome Programs, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, Associate Professor of Pediatrics at Harvard Medical School, SCNIR Advisory Board member 

Akiko Shimamura MD graduated from the University of Rochester Medical School in 1991. She earned a Ph.D. from the same institution in 1990. Her area of clinical interest includes: Inherited bone marrow failure and aplastic anemia, Swachman-Diamond syndrome, Fanconi anemia and Diamond Blackfan anemia.

Dr. Shimamura directs the Bone Marrow Failure and Myelodysplastic Syndrome Program of  the Dana Farber/Boston Children’s Cancer and Blood Disorders Center. Her research focuses on translational studies spanning clinical through basic science investigations to understand the genetic and molecular basis of bone marrow failure, MDS, and leukemia predisposition with the goal of developing more effective and less toxic treatments. Dr. Shimamura had previously directed the Bone Marrow Failure Clinic at Boston Children’s Hospital and then at Seattle Children’s Hospital before returning to Boston Children’s Hospital in the fall of 2015.

Phone 617-919-6109
Fax 617-730-0934
The Shimamura Lab
Boston Children’s Hospital
1 Blackfan Circle, Karp 8210
Boston, MA 02115

LAURENCE A. BOXER, MD – IN MEMORIAM

5/17/1940 – 1/7/2017

Dr. Boxer was an active member of the Society for Pediatric Research (SPR), for which he served on its Council from 1982-1985, and then become the President of SPR in 1986. In 2001, Dr. Boxer was elected to the Council of the American Pediatric Society. He had an active leadership role in other academic societies such as the American Society of Hematology. He served on several editorial boards including a role as associate editor for the Journal of Clinical Investigation and the American Journal of Hematology. He was a member of a number of other societies including the American Society of Clinical Investigation and the American Association of Physicians.

In 1997, Dr. Boxer was elected as a Fellow of the American Association for the Advancement of Science. In May 1998, he received the Founders Award from the Midwest Society for Pediatric Research. He was honored by being selected to give the Distinguished Faculty Lectureship Award at the University of Michigan Medical School.

Dr. Boxer was a member of the executive board of the American Society of Pediatric Hematology/Oncology. Since the inception of the Severe Chronic Neutropenia International Registry, Dr. Boxer served on the Executive Board of Directors. He was the head of the publications committee for the Journal of Pediatric Blood and Cancer, and was on the publications committee of the journal Blood of the American Society of Hematology.

Most recently, Dr. Boxer was honored with the 2016 ASH Mentor Award for his sustained, outstanding commitment to the training and career development of early-career hematologists.

Additional Specialists

Professor Karl Welte, Co-Director
Phone 49-511-532-6710
Fax 49-511-532-9120
Kinderklinik, Medizinische Hochschule
Carl-Neuberg-Str. 1
30625 Hannover, Germany

Blanche Alter, MD, MPH, FAAP
Phone 240-276-7239
Fax 240-276-7836
NIH, National Cancer Institute
Clinical Genetics Branch
9609 Medical Center Drive
Room 6E452, MSC 9772
Rockville, MD 20850

Audrey Anna Bolyard, RN, BS
Phone 206-543-9749
Fax 206-543-3668
Clinical Manager
Severe Chronic Neutropenia International Registry (SCNIR)
University District Building
1107 NE 45th Street, Suite 345
Seattle, WA 98105 USA

Jean Donadieu, MD

Phone 33-1-44-73-60-62
Fax 33 1 44 73 65 73
Service d’Hematologie et
Oncologie Pediatrique
Hopital Trousseau
26 Avenue du Dr. Netter
75012 Paris, Cedex 12, France

Sally Kinsey, MD
Phone 44-113-206-4985
Fax 44-113-247-0248
Paediatric Haematologist
St. James’s University Hospital
Leeds LS9 7TF,UK

Philip S. Rosenberg, PhD
Phone 301-435-3996
Fax 301-402-0081
Division of Cancer Epidemiology and Genetics
NIH, National Cancer Institute
6120 Executive Blvd., EPS 7006
Rockville, MD 20852-7244, USA

Connie Zeidler, MD
Phone 49-511-546-0918
Fax 49-511-557-106
Kinderklinik Medizinische Hochschule
Carl-Neuberg-Str. 1
30625 Hannover, Germany

Tate

Tate Long 12-year-old, 7th grade from Medina, Ohio

Tate was diagnosed with Neutropenia at 16 months. After all the illnesses and unexplained fevers, we were relieved to have an answer. Starting G-CSF was not only lifesaving, it provided a “normal life.” He does well, though he has had several stays at the hospital over the years. Although he doesn’t like those episodes at the time, now he says when he thinks about them, they actually make him feel special and strong because he can get through them and get back to normal. Although Tate would probably like a cure, he is much more focused on having a pill someday because a pill would make him feel even more normal.

Last year Tate started middle school, which meant making new friends and sharing his condition with new people. Because of COVID, he wanted people to understand that he wore a mask at school all year because he knows what it’s like to be immunocompromised and thinks it is important to protect other people. Also because of COVID, hanging out with friends in the evenings and having sleepovers was new. Since Tate does his shot at night, he had to learn how to navigate and make sure neutropenia didn’t interfere with having a normal life. 

As an ambassador, Tate would like to create a gaming community with other kids with neutropenia because he feels like what has helped him the most is just knowing other kids have the same condition. It makes you feel less different. If interested, have a parent contact his parent to share usernames.  [email protected]

Liam

Age 17, Ohio

Liam is in the 12th grade in Cincinnati, Ohio. When he was 1 month old, he was found to have a sore on his hip. His pediatrician sent him to have some lab work done which revealed a critically low neutrophil count. He was hospitalized for a week at that time, diagnosed with Neutropenia and started on daily Neupogen injections. In the months to follow, genetic testing and a bone marrow biopsy revealed that Liam has Severe Congenital Neutropenia, Elane gene mutation. Liam continues to receive low doses of daily Neupogen injections with great response. He has lab work done at least monthly with an annual bone marrow biopsy for observation. Aside from an occasional skin infection that may require an admission with IV antibiotics, Liam is overall, otherwise a “normal, healthy kid”.

When Liam was 8 years old, he was overheard telling his brother’s 10-year-old friend all about Neutropenia, lab draws and bone marrow biopsies. It was at that time that his parents realized that Liam needed an opportunity to “tell his story”. He started giving presentations to his class every year about his Neutropenia. Since then, Liam and his family have found several ways to help raise awareness about Neutropenia and funds for research and peer support by joining the efforts of the Ella Jewell Foundation and the National Neutropenia Network (NNN). They have held garage sales, Bowling events, Turkey Trots, Painting Nights Out and Power Play events at their local Dave & Buster’s. Liam has also been involved in a few of the past NNN summer conferences, sharing his story with parents and physicians as well as being a role model to the younger kids in attendance. Liam continues in these efforts and has expanded into his local Cincinnati Children’s Hospital community to advocate and give back for all of the blessings he has been given. For all his work on behalf of the Neutropenia community, Liam has earned the title of one of our Junior Ambassadors for 2022-2023

Liam serves as a member of the Patient Advisory Council and the Champions Program at Cincinnati Children’s Hospital. These groups allow Liam to connect with other patients, families and staff at the hospital. The advisory council specifically “gives patients a voice in the decisions that affect how they receive care. They support current patients, help staff see the hospital from patient perspectives, advocate on behalf of patients and identify ways to make Cincinnati Children’s a better place for the children they serve.” The council has given Liam the ability and accountability to help improve the impact the care has that he and fellow patients receive at the hospital.

The Champions Program offers many different opportunities for becoming involved in the community. Liam has been able to speak multiple times in front of Hospital Leadership teams about his experience as a patient and having Neutropenia, he has taken part in both radiothons and telethons for local stations to raise money on behalf of Cincinnati Children’s Hospital. Liam was also  given the opportunity to present a check from an annual fundraiser to the hospital for Neutropenia research being conducted at Cincinnati Children’s-the tv host interviewed Liam live which allowed Liam to raise awareness about Neutropenia, what it’s like to have grown up with it and how he is treated for the rare disease.. All of these opportunities have been invaluable to Liam, as they really help him to take ownership of his Neutropenia and take pride in being able to make a difference with the gift he has been given in life.

Recently, Liam participated in a webinar hosted by  the Barth Syndrome association in which he was able to give the teen perspective of growing up with Neutropenia. He focused on mental health awareness and strategies that he has used to advocate for himself.

Every November since 2013, Liam’s family holds an event to raise funds and awareness for Neutropenia research and peer support.  Last year, due to Covid, the event was a virtual Grand Raflle event in which $17,820 was raised for Neutropenia research and peer support programs!! To date, Liam and his family have proudly raised over $106,000 for Neutropenia research and peer support.  Liam is looking forward to this years’ event which will be Fowling!

Jaiya

Jaiya is a 10th grader in North Carolina.  She was diagnosed at the age of 2 with Chronic Severe Neutropenia-Autoimmune.  She is blessed with an extremely supportive family and community who are giving Jaiya a strong foundation to define Neutropenia on her own terms.  She has certainly found her voice in raising awareness and being an advocate for the Neutropenia community.

#1: World Rare Disease Day

Each year Jaiya encourages her friends and family to participate in World Rare Disease Day by wearing denim, zebra ribbons, and this year lighting up their homes and places of business.  She simply sends a text blast that includes information about her story, Neutropenia, and the national Rare Disease Day campaign.  She provides people with zebra ribbon before the actual day.  Everyone takes pictures of how they support the movement and posts the pictures on social media and use the hashtag #ilovesomeonerare #1inamillionJaiya. Over 100 people reposted a graphic designed for the Rare Disease Day in support of Jaiya.

In previous years, she has partnered with two schools and her cheer gym to promote this campaign. The schools set up stations around campus where students came to paint their hands and take fun pictures.  She named those stations “Zebra Hubs”. Jaiya also created a short slide show about Neutropenia and the Rare Disease Day that displayed in the areas. Her cheer gym set up a rotation where athletes and coaches could participate before and after practice. Jaiya created small two-sided handouts for the participates and other people in the building.  One side had details about Neutropenia and the other side had details about Rare Disease Day.

Jaiya has already began planning for Rare Disease Day 2023, with a basketball tournament in motion.

#2: Social Media Campaign

Jaiya is dedicated to promoting awareness for Neutropenia as well as connecting with other individuals with the disorder.  She and her parents created two social media platforms that she uses strategically to promote awareness.  They have connected with people living with Neutropenia from Ohio to South Africa. Planning meetings were held to target 8 important areas to share with social media.  She has launched the following things on her social media platforms:

  • The Love and Light Motivational Posts (Let’s Stay Lifted)- Posts used to motivate and encourage the rare community during the pandemic and in general.
  • Jaiya’s Networking Journey (Let’s Connect to get Educated)– Highlights of Jaiya’s efforts to network with other rare community organizations.  Through attending virtual conferences and webinars.  (NNN, EveryLife Foundation, Global Genes)
  • The Chronically Ill and the Pandemic (Let’s Stay Safe)– Post about pandemic safety measures. As well as DIY project highlights (making masks and hand sanitizers, essential oil rollers, etc)
  • Neutropenia Chronicles (Let’s Share the Experience)- Post to share the experiences of Jaiya’s doctor  visits and hospital stays. 
  • Health Tips (Let’s Stay Healthy: Mind, Body, and Soul)- Post about exercises, healthy eating habits, essential oils, mental health, and spiritual maintenance.  
  • HERstory, Issa A Movement (Let’s Get Involved)-  Post that advertise events and service projects, planned by Jaiya and her network, to bring awareness to Neutropenia.  She invites the community to participate and post information about the events after they happen.
  • All About Neutropenia (Let’s Tell the World)- Post to exclusively share information about the disorder itself (e.g. Top 5 Tips- Safe at school with Neutropenia, 10 Neutropenic Precautions, What’s Up with Your Neutrophil, etc.).
  • Parents of Zebra Tips: POZT (Let’s Support the Caregiver)- Post that give tips to parents/caregivers of children with rare disorders. Tips that include self-care tips, medical insurance tips, safe school tips, and more 

To learn more about Jaiya’s Social Media campaign, visit the following social media links:

Instagram: jaiya4neutropenia

Facebook: Jaiya For Neutropenia Awareness

#3 Paint for Neutropenia

“Art can be a versatile form of therapy that can help all ages” is a quote that we believe in, so we decided to partner with a local artist, NKPaints, another year for a Paint for Neutropenia event. It was an event to uplift, empower, and overcome with creativity. The participants learned about Neutropenia through a presentation prepared by Jaiya. Over 55 people came to participate, and the event was advertised in the local media.

#4 Jaiya Evanni Foundation Wrapped By Jaiya Evanni November 2022

Jaiya has spent most of the year hand-knitting scarfs and blankets for her Wrapped by Jaiya Evanni project. In November she will deliver the scarfs and blankets to the hospital where she is treated for the other children and care givers that are also treated there. In order to raise funds for the materials needed for this project, Jaiya partnered with Balance Candle Bar. She created a custom candle and label to sell.  

“The Jaiya Evanni Foundation, Inc is a movement that has existed, in ACTION, for years.

Since Jaiya was diagnosed with Severe Chronic Neutropenia- Autoimmune at the age of 2 the Clark family has educated themselves and in return blessed the community. We take great pride in bringing awareness to Neutropenia as well as blessing diagnosed children and their families. Our actions speak louder than any words we could ever speak but we must say to EVERY Zebra out there…

You were born to stand out!

Bloom RARE! “

Ella Jewell

Age 12, Connecticut

“Ella Jewell was diagnosed with Severe Congenital Neutropenia at 3 1/2 months old. After being told by many doctors in the New York City Area that they were unsure as to why Ella had zero neutrophils, her family sought out the expert opinion of the late Dr. Larry Boxer. After being in isolation with Ella for months, they drove to Michigan from New York. Dr. Boxer helped to diagnose Ella and get her on the one medication available to treat Neutropenia –  GCSF/ Neupogen. The medication worked well for Ella and her family found out the medication was working on Christmas Eve. They were able to share Ella with their family for the first time on Christmas morning. Dr. Boxer referred to Ella as the Christmas Miracle Baby! Ella’s family felt fortunate for how well Ella had done and wanted to do all that they could to move research in the right direction for Ella and everyone diagnosed with Neutropenia. They asked the doctors how they could best support the research. Unfortunately, at the time there was not another organization directly assisting with funds for research. With the support of Dr. Larry Boxer and Neutropenia expert, Dr. David Dale, the Ella Jewell Foundation was established to support Neutropenia Research. The Ella Jewell Foundation works closely with the National Neutropenia Network and the Neutropenia community to help patient support programs and research. Every penny raised is donated. Ella has her challenges with her diagnosis, but her family stays positive and with the Neutropenia community and researchers, they work towards the ultimate goal ~ a cure.” 

Olivia

This is Olivia’s story. She tells it with honesty and courage. Few stories better convey the conflicts, confusion and challenge of living with a rare and chronic disease. In Olivia’s case, a disease that has caused heartache for two generations of her family. We are grateful to Olivia for being so open and truthful in her generous narrative.

I Am Olivia

I like to think that throughout my life I have more or less done my best with what I’ve been given. My best cannot always be the best-but that’s okay. Recently I have come face to face with some significant self- discovery. Thus leading me to a number of topics and feelings that are, to me, less than comfortable to face up to.

My name is Olivia, I am a part time college student/table busser/eighteen year-old hopeful. Sometimes it feels as though I am full time Neutropenic/anxiety ridden/barely existing half-human. As far as the chronic illness goes, I was born with Cyclic Neutropenia, of which I inherited from my father, John. My grandparents had three out of five children, all sons, born with Cyclic Neutropenia. Two of them, Matt and Louie, died in their later teens.

My father and I started on GCSF, Neupogen, “the juice” just about a year apart. It must’ve been 1996 when I started receiving injections daily. My parents had been reluctant to have me on the medication. I think mostly due to imagining administering to their first born infant a poke with a needle every night. But when after a year or so of being alive I had been frequently hospitalized and treated for infections and jabbed with butterfly needles into my tiny veins, they decided that since I wasn’t getting better the medication was a good idea. I’m thankful they did. I’m also extremely thankful more and more for the NNN and their vast abilities to make something collectively positive out of the excruciating mess of disease. I see the faces of Audrey Anna Bolyard and such like Lee Reeves, both of whom I have known since before I can remember. I know they and the other doctors, researchers, event planners, etc will always hold a special place in my heart. I truly do not know where I would be were it not for their advancements and painstaking care for human life. I do know that to have been a part of something so important and to have met and known some of those most outstanding individuals is an honor I hold dear.

Growing up sick wasn’t all bad. I could talk for days about the suffering I’ve felt in my body and my heart. Everything I struggled with growing up I still struggle with in my life today. Keeping friends is still hard, (partly due to my social anxieties and introverted tendencies) in that often I don’t want to hang out. I don’t want to text or socialize. I’ll feel tired and achy. Which is nothing against any of my companions, at that point it’s about me and really what I need. I’ve missed out on a lot of social events, field trips, school dances. I couldn’t have a job until after I completed high school, and even keeping up with that’s hard. It makes prioritizing a mandatory skill. Often I’ve taken things out of my schedule to make room for getting better physically and mentally. I’ve noticed how the cyclic part of my life has been prominent in my day to day obstacles as well as my blood cell production. It seems as if I will fall sick and have to drop everything that I’m working on, during which I fall behind on my life -school work, mostly, but also prominently I fall behind on my medications which result in even more pain and another cycle all over again later. By the time I feel better I have mountains of work to complete and a deluge of tasks, friends, chores, to catch up on. When these feelings of being overwhelmed completely shut me down, it feels like the hardest thing in the world to get even a chapter of homework done. So I spiral into the next phase of my emotional cycle which is just me not doing my work or taking my shot, because it scares me and I’m afraid if I attempt to pick myself up I will fail. It feels too hard. Eventually I do pick it back up and get my crap done, and it’s not ever been as dreadful and titanic as my mind says. Currently I’m working on the getting back up part. I just haven’t worked out how to get past that ending rut in a timely manner. Usually when I finally do get back in the swing I’ve missed out on even weeks of activities and important functions, which takes its toll. When I miss out on so much of life, my life, it hurts me. I wonder if I’m a real person or just a useless, needy sick person. Which I’m not. I’m not sick all the time even. Sometimes it’s like I don’t even have Neutropenia because I feel so healthy and strong (which can also make it all the more crushing when I hit my low cycle again). And I have to remind myself that it’s okay to have things in my life to overcome- everyone has them. When I’m not feeling cripplingly immobile, I’m confident that I will conquer them.

I have things I’m proud of as well. I’m proud to administer my own shot, something I had my parents do for me until I was seventeen years old. That was something I had to work to get past and I did. I’ve graduated high school on time, something teachers, deans and my parents were alternately unconvinced I would do. But I did. And I worked hard, even during the summers in order to get everything completed. I get so caught up in putting myself down and convincing myself I’m useless, when really I’m not and have never been. My disease does not make me any less of a human being, and it does not stop me from following through with my goals. When I was little I wanted to be a ballerina but was told I couldn’t because ballerinas couldn’t afford to get sick and miss rehearsals and recitals. So I didn’t become one. But I wish that I could tell myself how real and possible dreams are for even the chronically ill. I wish I could explain how endless the possibilities are, because I’m not limited. I’m full of joys and talents and capability. I weep for my childhood self, for the doubt I’ve felt toward me and who I could become. Now I open my arms and feel endless power and strength. I’m already more than I ever thought I could and would be, and I know my future is going to be even greater. I’m more than my disease, and I wish I could feel so all the time. Life confuses me more and more the older I get. I’m still trying to understand how there can be so much pain and suffering in the world, in one person, all at once. I use the terms “sometimes” and “I think” and “it seems” because they are not absolutes. I used to tell myself the only consistent thing in my life was inconsistency. Getting through a month is like being a dancer, pivoting and leaping to changes in my environment and how my body is feeling. Beyond my obstacles I will grow and I will flourish and maybe someday I will understand why things are the way they are. For now I’m still working on a number of things, but mostly I’m working on knowing I’m okay and that I’m good enough and that I am more than just Cyclic Neutropenia.  I am Olivia.