COTA for Elliana

Our Story

Elliana Cloin is a bright, energetic young girl.  Although a bit shy at times, she always carries a smile, and brings joy to everyone.  She loves soccer (plays on 2 teams), horseback riding, and all the typical things young girls tend to enjoy (especially unicorns, rainbows, and the color pink!). 

She would also come down with the typical illnesses like most kids (colds, sinus infections, etc.).  However, the one thing that set her a bit apart from other young girls (including her sister) was that she seemed to get sick more frequently.  This trend appeared to slowly increase, along with hitting her with more intensity and requiring longer recovery times.  Although physicians believed she was recovering and things would be alright, something seemed off.

During another bout of illness, which evolved into the onset of pneumonia, we were adamant that more investigation was needed.  Blood work indicated a lower-than-normal white blood cell count, but she recovered.  She was once again back to behaving like a normal, healthy child.  Physicians again believed she would be ok, but we were still concerned.

We pushed to repeat her blood work after a couple of months.  Even though she appeared healthy at the time, that repeated blood work was still abnormal, again indicating a white blood cell count below the normal threshold.  We were determined to investigate further.

We ended up visiting with a hematology specialist at St. Louis Children’s Hospital.  He also initially believed she would be ok, but agreed to continue investigating.  After yet another bout of a common illness, we were steadfast in our advocacy to further pursue the underlying cause.  Working with the hematology specialist, we discussed a variety of tests we could consider.  He was clear in stating that he did not expect to find anything, but offered an option to conduct a few recently available genetic tests via simple blood work.  We agreed to give them a shot.

To our surprise, a genetic test returned with a definitive result:  GATA2. 

Our world changed in that instant.

GATA2?  What’s GATA2??? 

Elliana Cloin (3^rd grade, 8 years old at the time) had been diagnosed with a very rare condition called GATA2 Deficiency Syndrome.  This condition causes stem cells to malfunction.  Essentially, her bone marrow is not producing the immunity cells needed, thus her immune system is progressively weakening.  If untreated, she would develop leukemia.

The only treatment for this condition is a Stem Cell Transplant, also commonly referred to as a Bone Marrow Transplant (BMT).

This is extremely difficult news to take.  We have a diagnosis, but the road ahead would be difficult. 

But we did receive extremely positive news.  Although there is only a 25% chance that a sibling is a donor match, we were very fortunate that her sister, Madelina (5^th grade, 10 years old), is a 100% bone marrow match.

Nevertheless, the path forward is challenging…

1. Our family begins quarantine protocol February 23, three weeks prior to transplant (T-21).
2. Elliana (having just turned 9 years old on March 5) is admitted to St. Louis Children’s Hospital March 8, one week prior to transplant (T-7).
3. Elliana receives 7 days of a regimen immunosuppression and chemotherapy medications to eliminate her malfunctioning cells (bone marrow).
4. Madelina is admitted on March 15 for the donor transplant (T Day).
5. Elliana remains in the isolation unit at St. Louis Children’s Hospital for ~6 weeks after transplant (T+1 to T+42) receiving further medications and stimulation for the new stem cells (bone marrow) to graph with her body.
6. After release from the isolation unit, Elliana continues under strict quarantine protocol for the next ~200 days to provide the new stem cells (bone marrow) with enough time to grow and rebuild her immune system (T+42 to T+200).
7. Although it can take ~2 years for her immune system to be fully intact (T+700), Elliana’s immune system is anticipated to be rebuilt enough for her to begin resuming activities (such as returning to school) ~200 days after transplant (T+200).

There are plenty of risks, but there are some positives:  We found it early, before the onset of leukemia.  And we have a sibling match! 

There is a long & challenging path ahead of us, but the likelihood is good that after this procedure, she will be able to live a long and healthy life. 

Please keep Elliana in your thoughts and prayers. 

~~ The Cloin Family

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.