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Action in the Face of Grief from Rare Disease (HLH)

Rare Disease journeys can be long drawn-out battles with an unknown diagnosis for years. Sometimes they can be a quick bolt of lightning that comes out of nowhere and takes away a loved one. Last week, our Strategic Communications Associate, Peter, sat down with Maire Kyriacou to discuss the story of Lili, her daughter, who sadly passed away from HLH last year, after only 16 days of knowing she was sick.

Maire is from the UK and currently lives in Cyprus.

Below, Peter recounts Maire’s telling of the last days of Lili’s life and her own ongoing fight against histio.

Lili Kyriacou’s battle against HLH

Lili Kyriacou, referred to as Lils, was a diligent and hopeful teenage girl. That’s one of the things Maire remembers about her most. Lils wanted to be an MEP, (member of the European Parliament) when she grew up, to make the world a better place.

Lili Kyriacou who passed in February 2021 from HLH
Lili, at age 13

One of the fond memories Maire recounted to me about Lils was how when she would have bad dreams as a younger child, Maire would sing her back to sleep with the Rainbow Song, the song where you name all the colors of the rainbow “Red and yellow and pink and green…”

Near the end of January 2021, 13-year-old Lils began to feel ill. She would get too hot, and she couldn’t get to sleep. When she could, it was a fitful sleep. On January 30th, Lils had a test at school, one of the few in-person events they allowed students to go to during Cyprus’ COVID lockdown. As usual, Lils felt determined to still go, despite feeling unwell.

She nearly passed out partway through the test and was sent to her grandparents’ house while Maire was at work.

The following night, Sunday January 31st, Maire tried to get Lils to sleep in her bed so she could watch her. Maire witnessed first-hand the hot and restless sleep Lils experienced. At a certain point she couldn’t sleep at all. Maire called the nearest general hospital and went to their ER.

Once they ruled out Covid, doctors ran more tests, and eventually sent Lils to Makarios Children’s Hospital. They traveled there through an unusually dense fog; on another level, she too felt like she was going through a fog with Lils since this all started, unable to see what was truly ailing her yet.

Maire (left) and Lili being silly together

Though Lils’ histio journey had only lasted a few days so far, now it would truly be a journey across Cyprus, through emotions, and with various medical teams, to try to find out what was wrong.

Lils’ case was becoming more serious by the time they reached the Children’s hospital that night. Her veins had collapsed, so getting any IV in was agonizing, when it was even possible. Her body was fighting itself and putting Lils through the pain that it was causing. All the while, she was still herself, she made sure to wish her mom a happy birthday as it turned over to February 1st. As Maire said, “That’s the type of girl she is.”

That night Maire sat with Lils after she underwent a bone marrow aspiration. Lils was having a terrible reaction to the anesthetic she received and had night terrors. Maire soothed her to sleep like she always had; she sang The Rainbow Song to her. They sang it together as Lils drifted off to sleep. That was the last time Maire heard her daughter’s voice.

Maire says she doesn’t remember any doctors’ names, but she remembers one doctor who came in to test Lils the next morning. She had a nametag with letters like the Hollywood sign:

Pediatric Oncologist

This terrified Marrie, thinking that her daughter was going to receive a diagnosis of cancer.

Instead, she was later told that they believed Lils had Hemophagocytic Lymphohistiocytosis. Something Maire couldn’t even pronounce, no less get her head around. They said Lils was only the 3rd case of HLH in all recorded Cyprus medical records.

“I think she could hear us, she couldn’t respond, but I think she could hear us”

Uncertain of the diagnosis, and treatment just yet, they placed Lils in a medically induced coma so her body could heal, without the restless sleep she was still experiencing and side effects of the pain medications she was on.

Lils started to turn some corners once they started chemo treatment. She turned 14 while still in the coma. Maire and the nursing staff all sang happy birthday to her. “I think she could hear us, she couldn’t respond, but I think she could hear us.”

Sadly, the chemo ultimately couldn’t fight off the HLH at this stage and Lils passed away on February 13th, 2021.

Maire’s continuing battle against HLH

Lils story doesn’t end there, however.

Maire has been fighting for her daughter, and others with HLH, ever since.

“When you’re faced with this…you can’t be expected to figure out a disease. All you can see is the person you love, and that you can’t do anything for them”

She wants to help families and doctors be better informed about histiocytosis starting right in Cyprus. She hopes to be the ember that lights the flame of new awareness of histiocytic disorders in Cyprus.

In pursuit of those efforts these past two years, Maire has worked with us at the Association, oncologists in Austria, Histio UK, Sick Kids CA and many more organizations and doctors working to treat and cure histio.

She participated in interviews with the state radio station (RIK) and has had a few interviews on the local TV station, Sigma.

She has started by encouraging doctors in Cyprus to attend CME webinars or other webinars exclusive to medical professionals. Doctors are busy by profession, but many of these webinars are free and easy to access and are often just an hour and a half. If she can just get some doctors to attend, and be more aware of what to look for, she knows that will move the needle in treating HLH earlier so less people may die from it.

Maire also hopes that it also helps get Cyprus doctors on the world’s stage. They have fantastic doctors that did all they could to treat Lils and a new generation of doctors who need to learn more about histio.

Maire wants to start her own association in Cyprus so that people have more access to information and support for their histio disease during that tumultuous time in their lives.

The information needs to be right there for people, in layman’s terms, so when they are face to face with a life threating disease, theirs or a loved one’s, they can have somewhere to turn for support. “When you’re faced with this…you can’t be expected to figure out a disease. All you can see is the person you love, and that you can’t do anything for them”

She’s done a lot so far to raise support for her efforts to bring awareness, and funds for a future association. Maire has done walks for HLH in Cyprus and in the UK where her sister lives. She has also started the Blue for Histio campaign in Cyprus, and all over Europe, every September for histio awareness.

Maire is doing what Lils’ herself would try to do. Since Lili herself wanted to pursue public service and legislation to enact meaningful change. 

Thankfully, some of that is already being done in her absence. The EU recently finished a 2030 foresight study in 2021 for rare diseases. Maire hopes this will get more funds for histiocytic disorders all over Europe. The study ultimately presented to the 2021 EU Parliament with 7 main themes encompassing their recommendations:

  1. Political & strategic frameworks relevant to rare diseases.
  2. Data collection and utilization,
  3. Availability of medicine and devices for orphan diseases
  4. Basic, clinical, translational, and social research for rare diseases
  5. Diagnostics
  6. Integrated, social, and holistic care
  7. Rare disease patient partnerships
  8. Access to healthcare.

Maire’s Story, in her own words

She wants to start getting the word out more and more. So, she put Lils’ story in her own words. Maire has written a book called “Musings of a Grieving Mam.” This book recounts the last 16 days of Lils’ life. As Maire says, “Lili isn’t 16 days…HLH will never wear that out”

Her hopes are that the story in this book will inspire all that read it and inform as many people as possible of the terrible fight that goes on with HLH, through what Lils endured. With the proceeds and reception in Cyprus and other places worldwide, she hopes to add more fuel to the fire of starting a Cyprus histio association.

“Lili isn’t 16 days…HLH will never wear that out”

“Musings of a Grieving Mam” is available for preorder now, and will be fully available, internationally, (through UK publisher Austin Macauley) tomorrow, December 16th. It’s also available through Amazon in the UK and internationally. It is a raw retelling of her experience with Lils’ HLH, so explicit language is present.

The book, as part of its UK publishing, the UK will add it to the British Library and five of the most prestigious the universities in Britain: Oxford, Cambridge, Dublin, Edinburgh and Aberystwyth.

We would love it if you would ask your local library to carry it as well. You can send them the Barnes and Noble or Amazon link through email or chat, or simply give them the name over the phone and request that they order the book. If you can, ask friends in your community to request it as well. The more coverage this book gets, the more awareness there is for the fight against histio in Cyprus and in Europe as a whole.

“If my book saves one life, I’ll be over the moon”

For further updates on Maire’s ongoing fight for histio awareness in Cyprus and Europe as a whole, follow her at Lils_HLH on Instagram. You can also view her recent TV interview here.

Click here to see previously funded HLH Seed Grants.