For most families, a winter cold means a few days at home with tissues, warm drinks, and extra cuddles. For two‑year‑old Bassel and his mum Abir, a simple virus can mean weeks in hospital, dangerous drops in oxygen levels, and moments no parent should ever have to face.
Bassel lives with Miller–Dieker Syndrome and lissencephaly – rare neurological conditions that affect his brain development, muscle tone, breathing, and ability to swallow safely. He experiences seizures every day and is extremely vulnerable to respiratory infections. His Mum Abir is his full‑time carer, and they both navigate life together, just the two of them at home.
Over the past 12 months, Bassel has been in and out of hospital more times than Abir can count. What starts as a cough or a mild virus for most children can quickly become life‑threatening for him.
Because of his condition, Bassel struggles to clear his airway. Saliva can enter his lungs, causing bacterial infections, pneumonia, and severe breathing difficulties. Almost every infection leads to a hospital stay – often in high dependency units – and many admissions last over a week.
“Every time we go home, we end up back there again,” Abir explains. “He gets a virus, we go to hospital, he recovers a little, we go home… and then we’re back again. It’s exhausting.”
Abir describes one terrifying moment when Bassel was discharged from hospital, only to stop breathing at home just five hours later. An ambulance rushed him back, and he spent ten days on high‑flow oxygen.
“I kept saying something wasn’t right,” she recalls. “As a mum, you just know. But nobody listened. It’s so scary when you’re trying to advocate for your child and feel unheard. I knew he needed treatment tailored to his condition, not just care for a common virus.”
To protect Bassel, Abir has to treat every day like a high‑risk environment.
She washes her hands before touching him, asks visitors to wear masks, and checks that anyone entering their home has been symptom‑free for at least a week. They avoid busy places, especially during winter.
“We don’t socialise much,” she says. “We’re home all the time. I do everything I can, but he still gets so many infections. It’s heartbreaking.”
Frequent hospital stays, sleepless nights, and the constant fear of infection take a huge emotional toll.
“You just get on with it,” Abir says quietly. “You don’t have a choice. But it’s exhausting. You have to be strong all the time.”
Bassel needs round‑the‑clock care – suctioning, feeding support, seizure management, medication, and now oxygen at home. Abir rarely gets a moment to herself.
Where Jessie May makes a difference 💜
In the middle of all this, Jessie May has become a lifeline.
For Abir, Jessie May nurses aren’t just carers – they’re a source of emotional support, reassurance, and genuine companionship.
“They’re like family,” she says. “They don’t just come to look after Bassel and his medical needs. They support me. They listen. They understand. When they visit, I finally feel like I can breathe. I get so excited when I know they are coming to see us.”
Jessie May visits allow Abir to do essential shopping, rest after long hospital stays, and have a moment of normality in an otherwise overwhelming routine.
“Sometimes I just go out for two hours to get everything we need. I can’t do that alone with Bassel. Jessie May makes that possible.”
Why awareness matters
Abir wants people to understand that everyday viruses can be devastating for children like Bassel.
She hopes that by sharing their story, others will think twice about visiting vulnerable families when unwell, and recognise how important infection control is for medically fragile children.
“People love Bassel. They always want to come close, to cuddle him. But they don’t realise how dangerous that can be. I just want people to be aware.”
Despite everything, Abir speaks about Bassel with overwhelming love. He is a beautiful, gentle little boy who brings joy to everyone who meets him.
“I’m so grateful we finally have oxygen at home,” she says. “It makes me feel safer. I know when to take him to hospital. I know how to care for him. We just take each day as it comes.”
Bassel’s story is a powerful reminder of the unseen challenges faced by families caring for children with complex medical needs, and of the vital role Jessie May plays in supporting them.
