Hina’s Letter: A Mother’s Moment to Breathe
Dear Friend,
I’m writing to you not as a fundraiser or a representative of a charity, but as a mother sitting on a park bench, finally taking a moment to breathe. My son, Dian, is living with autoimmune encephalitis, and our family has been walking this path for five years. I want to share our story with you-not to overwhelm you, but to help you understand what encephalitis can take from a child, and what your support could give back.
Before encephalitis, Dian was… simply Dian.
He was seven years old-quiet, cheeky, full of smiles. He loved puzzles, movies, and Lego more than anything. We were an ordinary family living an ordinary life: animal parks, birthday parties, dinners out, little treats, and the beautiful chaos of two young siblings who fought and adored each other in equal measure.
We had no idea how quickly life could change.
The beginning of our journey
It started with a cold he couldn’t shake. Nothing alarming at first-he’d had health issues before, and we weren’t the panicking type. But slowly, almost quietly, he stopped being himself. He was exhausted, falling asleep at school, giving up Lego, losing his smile.
I still ask myself why I didn’t see it sooner.
Weeks later, everything changed. One Sunday morning, we woke to the sound of Dian having a tonic-clonic seizure beside us. Our world collapsed in an instant.
After two weeks of tests-MRIs, lumbar punctures, EEGs-we were sent home with an epilepsy diagnosis. I had never seen a seizure before. Watching your child’s body stiffen, lips turn blue, foam at the mouth, blood on the bedsheet as he bit his tongue… it breaks something inside you that never fully heals.
The diagnosis that changed everything
Months later, after pushing and waiting and hoping, we finally learned the truth:
Dian had seronegative autoimmune encephalitis.
We had never heard of it. Google became our lifeline. Treatments were tried, and some worked but we couldn’t stop the seizures. The inflamation in his brain reduced. We were told this journey might be short. It wasn’t.
The impact today-on Dian, on us, on our daughter, on our lives
For years, Dian had two to three tonic-clonic seizures every day. Some made him vomit. Some turned his lips blue. All of them terrified us. His little sister, only five at the time, witnessed nearly every one. We all needed therapy to cope with the trauma.
We grieved the life we had.
The freedom we once took for granted.
The ability to simply go-to the park, to a birthday party, on holiday.
Now everything requires planning:
Where can he rest?
What if he has seizures in the car, walking, wherever we are?
Who can watch him that is first-aid trained?
Will today be a day he can have energy to walk, be himself or smile?
Dian lost his natural laugh. He lost his confidence. He lost memories-entire holidays vanished from his mind. He became angry, scared, frustrated, and heartbroken. After seizures he would cry, “I hate having them. When will this stop?”
As parents, hearing that… it shatters you.
He now has drug-resistant epilepsy. Seven medication changes, and still daily seizures. On his better days, we see the impact of encephalitis clearly-slow processing, memory gaps, cognitive challenges. Lego takes longer. Movies help him rest. School is often impossible.
Our daughter became his little carer. Our work lives changed completely. Our world became small.
How Encephalitis International helped us breathe again
When we first received the diagnosis, we were desperate. I needed someone who understood-not just medically, but emotionally. I emailed Encephalitis International in tears, and they responded with information, compassion, and connection.
They helped us understand the diagnosis.
They connected us with families on the same path.
They gave us a place where we didn’t have to pretend.
Their family event was life-changing. Dian had just had surgery the day before, but we went anyway. For the first time, he didn’t have to explain why he needed a nap, why he was tired, why he struggled to speak. He could simply be himself.
The children smiled.
The parents exhaled.
We felt understood.
That day gave us hope-something we had been running low on.
Why I’m writing to you
Before Dian, we had never heard of autoimmune encephalitis. Maybe you haven’t either. But it can happen to any child, any family, without warning.
Dian is lucky to be alive.
We now understand how many signs we missed, how close we came, and how vital timely treatment is.
Your support could help families like ours-families who have lost the simple freedoms of childhood and parenthood. Families who live minute to minute, never knowing what the day will bring. Families who need information, connection, and hope.
Your kindness could mean the world to a child like Dian, to siblings like his sister, and to parents like us who are trying our best to stay strong.
Thank you for taking the time to read our story. Thank you for considering supporting the Children’s Appeal. And thank you, truly, for caring.
With hope,
A mother who is still learning, still grieving, still fighting, and still believing for her son.