From the age of six months, Aiza has been cared for by Haven House.

Now aged twelve, her condition means that she needs constant care so the hospice plays a vital role in supporting her family.

Soon after birth, Aiza was diagnosed with a very rare metabolic disorder, causing severe neuro-developmental delay. She has many medical conditions including visual impairment and scoliosis. She also uses a wheelchair. Her mother Mariam gave up her job to become a full-time carer. Mariam explains,

Thanks to the support from Haven House staff, I’ve never felt that I needed to have carers at home. The respite it offers us enables my husband and I to do things that most families take for granted, like going to the cinema or on holiday abroad.

The family has enjoyed many of the services Haven House offers. Before starting school, Aiza and Mariam were regular fixtures at the weekly pre-school sessions and Mariam attends the parent coffee mornings, giving her a chance to talk to others who understand their situation.

With poor vision and limited movement in her hands, Aiza responds particularly well to music and sound. Aiza also enjoys feeling different textures which, combined with a story, help her to visualise, follow and understand. Aiza can’t communicate verbally but she laughs and signs to communicate. She loves tickles but will roll her eyes if she is not feeling up to it!

The family also use the toy home loan service, which lends out specialist toys and equipment to families in their own homes.

Aiza also stays at Haven House for respite care, where she enjoys Asian dance music as well as taking part in music therapy sessions. Last year, much to Aiza's mums surprise, her husband organised a lovely holiday for her special birthday. Aiza stayed at Haven House so her parents were able to enjoy the celebrations knowing Aiza was happy and safe.

Thank you will never be enough, says Mariam. I hope we are always lucky enough to have Haven House as an extended family.



Mum Mariam shares a letter she wrote and says she is Aiza’s one true voice.

 

Why my mum is not allowed to visit

Hi, my name is Aiza, Haven House has been my favorite home from home for nearly 12 years.

My first stay was just after my spinal surgery after my first birthday. The nurses told my mum to go home to rest, it’s the best thing they did!

Haven House is ours, the children who come to stay, to play and rest. Yes, mummies and daddies love Haven House too, but it’s our place to live.

The staff are all like my aunties and uncles, they look after me with tons of love and fun.

Everyone knows me, Aiza, they don’t see my disabilities, they enhance my abilities.

Although my parents love me, seriously I need break from them sometimes as they are crazy – in a loving way. They have made my life full of fun and love and Haven House has played a big part of this.

I want to say a huge thank you to everyone for making me matter.

Haven House, my friend, my family, my fun.

Aiza x