Koen is a one-year-old boy who suffers from severe eczema. His story reveals the emotional and physical challenges faced by families living with chronic skin conditions. His mother, Alana Spurgeon, shares their journey to raise awareness, push for proper care, and remind others to show kindness and understanding.
Living with Severe Eczema from an Early Age
Early signs: Koen has had eczema since he was born. But in January 2025, his condition became worse. Red, swollen, and inflamed skin began to spread all over his body. The only part of his body that was not affected was his hands.
Constant itching: The intense itchiness makes life very hard for Koen. He scratches himself on furniture, carpets, and even toys to try to relieve the discomfort. His mother says he scratches until he bleeds.
Public reactions: People often stare at him in public. Some even think he has chemical burns. These comments and looks have made Alana avoid going to crowded places. She feels judged, especially when people whisper or ask what is wrong with her son.
Children’s reactions: Other children sometimes avoid Koen. They look at his face and wonder why he looks different. But at home, his two brothers treat him like any other child. They hug him and play with him, showing love and care.
The Struggle for Medical Support
Doctor visits: After Koen’s eczema worsened, Alana visited the general practitioner every week for two months. The only treatment they were given was steroid cream. But it did not help much.
Hospitalization: In February 2025, Koen was admitted to the hospital. His face and eyes were very swollen. Doctors gave him IV antibiotics to reduce the swelling. Blood tests were done, but no allergies were found. He stayed in the hospital for a week.
Temporary relief: A dermatologist gave them a plan with different creams and medications. The swelling went down at first. But once they returned home, the eczema started to get worse again.
You can learn more about the different Eczema Types and their symptoms to understand how each form affects individuals differently.
Daily Life Challenges
Sleep problems: Koen does not sleep well. He wakes up often to scratch. He rubs his body on anything he can find to ease the itch. One night, Alana put scratch sleeves on him under his clothes, then put him in a sleeping bag. But by morning, he had taken everything off and scratched himself until he bled.
Skin damage: The scratching causes open wounds and bleeding. This increases the risk of infection and adds more discomfort. Alana says it is heartbreaking to see him suffer every day. Even when the sun is out, she cannot dress him in shorts and a T-shirt. He will scratch any exposed skin until it bleeds.
Searching for Better Treatment Options
Private care: Koen has now been referred to Great Ormond Street Hospital. But Alana decided not to wait. She booked a private appointment with a pediatric dermatologist. She believes this will help them get answers faster.
Raising funds: Alana started a GoFundMe page to raise money for private treatment. Thanks to donations, she can now pay for better care. She hopes this will give Koen a better quality of life.
Lack of answers: The biggest problem is not knowing what causes Koen’s flare-ups. The tests done so far have not shown clear allergies or triggers. Alana feels the doctors are only treating the symptoms, not the root cause.
You can learn more about potential Eczema Causes and how they might be identified or managed with medical support.
Emotional Impact on the Family
Feeling helpless: Alana has cried many times. She feels that no matter how hard she tries, it is not enough. Seeing her son in pain every day is emotionally draining.
Social isolation: Alana avoids taking Koen to public places. She fears the harsh comments and stares from strangers. People have said things like “what’s wrong with that baby?” or “did you see his face?” These remarks are painful and show a lack of understanding.
Support from siblings: Her other two sons continue to love and care for Koen without hesitation. They kiss him and play with him, ignoring the condition on his skin. Their kindness is a source of comfort for Alana.
Spreading Awareness and Encouraging Kindness
Going viral: Alana shared a video on TikTok that showed Koen’s condition. The video was captioned “please be kind” and went viral, reaching over 1.7 million views. The clip showed Koen rubbing himself on the floor to relieve an itch. Many people responded with support and empathy.
Raising awareness: Alana now wants to educate others about eczema. She admits she did not know how serious it could be until Koen became so ill. She hopes her story will help others feel less alone and encourage them to push for better care.
Fighting for care: She encourages parents to trust their instincts. If something feels wrong, they should keep asking questions and seek better solutions. Private care should not be the only option for getting taken seriously, but sometimes it is necessary.
You can read more about Eczema Treatments that may help families understand their options for better skin health.
Medical Response and Future Hope
NHS response: An NHS spokesperson said that they are trying to improve dermatology services. They want to reduce waiting times and use technology to help more patients. But for now, families like Koen’s still struggle to get timely and effective treatment.
Looking ahead: Alana remains hopeful. With private care and public support, she believes her son’s condition can improve. She dreams of the day when Koen can live a normal life without pain, without judgement, and without fear of being stared at in public.
Encouraging others: Alana’s message to other parents is simple: you are not alone. Push for the care your child deserves. Share your story. Do your own research. And never stop believing that things can get better.
Conclusion
Koen’s story is a reminder that eczema is more than just dry skin. It can take over a child’s life and affect an entire family. Alana’s strength, love, and fight for her son show how powerful a parent’s determination can be. Through her story, we are reminded to treat others with compassion and to support those who suffer from invisible health struggles.
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