Four-year-old Ilyas is a bright, happy little boy with a big smile and a love for books, painting, music, and Play-Doh. But behind his cheerful nature is a complex medical journey, a rare diagnosis, and daily challenges that impact his entire family.

Ilyas is the youngest of six siblings in a close-knit, loving household. His mum, Farhat, describes life as busy and full of responsibility - but thanks to the support from Haven House Children’s Hospice, they are not facing it alone.

Living with a rare condition

Ilyas has Trichothiodystrophy (TTD), an extremely rare genetic disorder that affects just 16 people across the UK. Both Farhat and her husband unknowingly carried the same faulty gene, which Ilyas inherited from both sides of the family.

When Ilyas was born, it was immediately clear something wasn’t right. His skin was fragile and scaly. He spent six weeks in an incubator, but the full extent of his condition wasn’t understood until years later.“His skin can’t repair itself like ours can,” Farhat explains. “Even cloudy weather can irritate him, and sunlight is dangerous. He also has developmental delay, hearing problems, weak muscle tone, and struggles with learning.”

His parents juggle his medical needs with daily life - hospital appointments, protective care, and constant attention to his comfort and health.
Despite the challenges, Ilyas is a cheerful little boy who loves to play, read, and express himself through creativity. “When he’s happy, he’s like any child,” his mum smiles. “But when he’s uncomfortable or in pain, it’s hard.”

Ilyas’s condition affects his mobility - his muscle tone is low, and he doesn’t always walk with stability. He also struggles socially, often hesitant to engage with people outside the family.

Discovering Haven House

The family were introduced to Haven House through their specialist nurses at St Thomas’ Hospital. Farhat admits that at first, she didn’t know what to expect from a hospice.

“I thought it would be strict and clinical, like a hospital,” she says. But Haven House is nothing like that. It’s a fun, engaging place where Ilyas feels happy and confident.

The importance of respite at home

Caring for a child with complex medical needs can be exhausting, with little time for rest, household tasks, or even a quiet moment. For Farhat, the weekly home visits from the Haven House team have been life changing.

Our Health Care Support Workers and nurses visit the family home to support Ilyas with fun, creative activities tailored to his needs. Their visits help him build confidence, enjoy new experiences, and develop skills, all while feeling safe at home. 

“Before, Ilyas wasn’t very social,” Farhat explains. “But now, when he hears their names, he smiles. He trusts them and looks forward to seeing them.”

Ilyas particularly loves music and making his scrapbook filled with pictures, characters, and colours of his choice. The sessions are always tailored to what he enjoys most, helping him learn through play and build confidence.

“It's about more than just play,” says Farhat. “They help him feel safe with new people, which is so important for him and us.”

Support for parents and carers

While Ilyas is busy playing, Farhat gets a much-needed opportunity to focus on household tasks - something that’s almost impossible to manage while providing full-time care.

“Respite care at home doesn’t mean I’m relaxing,” Farhat laughs. “It means I can finally cook, clean, or do the laundry without worrying. It’s the only time I get to catch up.”

With five other children of varying ages and Ilyas’s complex needs, balancing family life is never easy. But the support from Haven House helps ease that daily strain.

“I used to feel guilty if I left him with an iPad just so I could get things done,” Farhat shares. “But now, I know he’s happy, safe, and learning while I get on with what I need to do.”

A message to other families

For families who might be unsure about seeking hospice care, Farhat has a message:

“Honestly, I tell every parent with a child who has additional needs to go and talk to Haven House. You might be surprised like I was,” she says.

“Hospices aren’t just for the end of life - it’s about support, play, friendships, and giving our children the best experiences possible. Haven House has been the best thing for us Ilyas is happy, we’re supported, and I’ve learned there’s a whole world of help out there I never knew existed.”

Without your support, Haven House would not be able to support children like Ilyas. Every year we need to raise £6m to provide care and support to children and families going through incredibly difficult times.

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