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Please Help Baby Eian Have a Life Without Constant Pain
I never imagined I would have to ask strangers for help to ease my baby’s suffering. My love for my little angel is so deep that I would do anything for him — even things I never thought I would have to do.
When my baby Eian was born, my heart was full of love and hope.
But within minutes of his birth, that joy turned into fear.
Eian was taken away from me almost immediately. Instead of being placed on my chest, he was rushed straight to the Special Care Unit. His life did not begin with warmth, comfort, or safety — it began with pain, machines, wires, and alarms.
From his very first moments, something was wrong.
His delicate newborn skin was covered in rashes. For 15 agonising days, I watched my tiny baby lie alone in a hospital cot, surrounded by medical equipment instead of his mother’s arms. I waited, prayed, and begged for answers — but no one could tell me what was happening.
As the rashes faded slightly, we were discharged. I wanted so badly to believe he was getting better. I held onto hope — because as a mother, hope is all you have.
Before we left the hospital, I was told to return immediately if the rashes came back.
On 22 November, I saw new rashes spreading across his fragile body and rushed him straight back to hospital. We stayed there for 12 long hours, from evening until early morning. After a blood test, we were sent home again.
For the next two weeks, I tried to settle into life with my newborn — but my instincts would not let me rest.
Eian was constantly uncomfortable.
His tiny stomach was swollen, tight, and painful.
He cried in a way no baby should ever cry.
Then I saw blood.
Blood in his stool.
Later, blood in his urine.
That moment shattered me.
I rushed him back to hospital in terror. When we arrived, his oxygen levels were dangerously low. His little body was struggling to survive. Doctors found his stomach severely swollen, his breathing failing, and his liver and spleen enlarged. He was placed on high-flow breathing support to keep him alive — but despite this, he continued to worsen each day.
Further tests revealed that his spleen was almost double its normal size. Soon after, Eian became so unwell that doctors had to put him to sleep and place him on a breathing machine to save his life.
That is when our world collapsed.
Eian was diagnosed with Langerhans Cell Histiocytosis (LCH), stage 4 — a rare, aggressive, life-threatening disease. Cancer like condition.
At the time of diagnosis, the disease had already spread to his:
• Lungs (where large and small cysts had already formed)
• Liver
• Spleen
• Bone marrow
• Possibly his gut
Because Eian was not diagnosed for three months, the disease continued to worsen during that time. His lungs kept producing more cysts, forcing his tiny body to work harder and harder just to breathe and survive — without any treatment to help him.
From that moment on, Eian’s life became hospitals.
Needles.
Scans.
Surgeries.
Strong pain relief.
Medications day and night.
Things that should never belong in a baby’s life.
Eian has now undergone more than 50 scans and multiple surgeries. His tiny body has been through more medical procedures than many adults experience in an entire lifetime.
He started chemotherapy immediately. When the first treatment failed, doctors moved to second-line chemotherapy. But even that did not stop the disease.
Eian’s LCH flared again — more aggressively than before.
This second flare was devastating.
The disease spread further, now also affecting:
• The lymph nodes in his neck
• His mouth
During this relapse, Eian had three surgeries at once:
• A lymph node biopsy
• Surgery inside his mouth
• A bone marrow procedure
As if this were not enough, Eian then developed HLH — a second, extremely rare and life-threatening immune condition that can be fatal if not treated immediately.
Doctors were running out of options.
There are only five chemotherapy treatments in the world for this disease. Because Eian failed both first- and second-line treatments, his chance of survival with chemotherapy alone was estimated at only 20–30%.
The doctors made the hardest decision of all.
They began a very rare and extremely intensive treatment, combining chemotherapy with a targeted medicine. Eian is only the third child in the entire UK to receive this treatment. Worldwide, only a very small number of patients have ever received it, and many long-term side effects are still unknown.
Because Eian’s case is so rare and complex — LCH combined with HLH, lung cyst disease, and permanent adrenal failure — his condition is considered exceptional. His treatment is so unusual that it is being closely monitored and studied at a national level due to how rare and severe it is.
As a result of these treatments, Eian has already developed a permanent disability.
His adrenal gland no longer works. His body cannot produce the hormone needed to survive stress or illness. He must take steroid replacement medication for the rest of his life. Missing even one dose when he is unwell could lead to brain injury, kidney failure, or heart failure.
Eian is now 1 year and 2 months old, but developmentally he is closer to a 6-month-old baby.
He cannot crawl.
He cannot stand.
He cannot walk.
He cannot eat or drink by mouth — not even water.
His body has never had the chance to grow, learn, or explore like other children, because his entire life has been filled with pain.
He cries and screams from discomfort. The side effects of his treatment are severe and frightening — so frightening that I struggle to put them into words.
This is not a short illness.
LCH is lifelong.
Eian will never be free from this condition.
His treatment is long-term, intense, and ongoing.
Because of the cysts in his lungs, Eian cannot travel by aeroplane, as flying could cause his lungs to collapse. This makes accessing specialist care even more difficult and frightening.
For now, there is a short window before his next intensive phase of chemotherapy begins — possibly the only time he feels even slightly less unwell. We want him to experience comfort, small joys, and moments of happiness while he can.
What breaks my heart the most is this:
Eian has never known a life without pain.
No toys instead of needles.
No playrooms instead of hospital beds.
No peaceful sleep without alarms and machines.
Because of Eian’s condition, neither my husband nor I can work. Our lives revolve entirely around his care — hospital appointments, emergency admissions, and medications every few hours, day and night.
We are also homeless.
We do not have a safe, stable home where our critically ill baby can rest and recover between hospital treatments.
We are not asking for money for medical treatment — Eian’s care is currently provided by the NHS.
We are asking for help so that Eian can have:
• A safe and stable home
• Warmth, comfort, and basic security
• Essential living needs while we care for him
• Travel to and from hospital for his continuous, intense treatment
• The ability to act quickly if his condition worsens
There is also a very real possibility that Eian may need to be transferred abroad for specialist care, including Norway, where I am already in contact with doctors. We are hoping with all our hearts that he receives everything he needs in the UK, but his illness has repeatedly failed standard treatments.
If doctors advise that care abroad becomes necessary, the process would be extremely difficult and costly, and without financial support, we would not be able to make this life-saving move for our son.
Please donate what you are able.
Every donation, no matter how small, helps us focus on our child’s care without the constant fear of how we will cope financially.
If you are unable to donate, please know that sharing this or keeping my children in your thoughts and prayers means more than I could ever express.
Thank you for reading Tiny Eian’s story.
Thank you for caring.
Thank you for helping our baby feel comfort in a world that has given him so much pain.
Organizer
