Muhammad Hashim was born with Hypoxic Ischemic Encephalopathy, a condition resulting from the brain being starved of oxygen at birth. The diagnosis came as a devastating shock to mum, Samina. It meant her child would always be considerably different to his older brother and two sisters.

Muhammad Hashim, who is 8, requires continuous care and Samina had to give up her job as a customer service manager after he was born. Her son cannot walk, speak or mobilise independently and uses a wheelchair. He also has cerebral palsy and epilepsy, resulting in frequent seizures. Throughout his short life Muhammad Hashim has often been critically ill with traumatic stays in hospital and intensive care.

When Samina was first referred to Haven House she initially thought using a hospice would be too scary, but her community children’s nurse encouraged her to visit Haven House to see for herself that we are a fun and warm place.

Samina says:

In the beginning I was so scared, but I’m really glad that I was referred as it opened my eyes to the support that’s available.

Samina began accessing music therapy and sensory play for Muhammad Hashim at Haven House in February 2012. He is visually impaired so music therapy and play helps him interact with the world around him. Coming to Haven House gave Samina the chance to have vital short breaks safe in the knowledge that Muhammad Hashim would be able to enjoy himself.

However, as he has become older his condition has progressively worsened making it harder and harder for Samina to take him out of the house. In June 2016, Haven House launched Hospice at Home, a new service to provide hospice care at home in the London Borough of Waltham Forest.

Samina says:

Hospice at Home has made a huge difference to Muhammad Hashim. Due to his condition sometimes it can be impossible to leave the house. He needs so much equipment and two to three people to help. Finding transport can be a nightmare.

Through Hospice at Home, Muhammad Hashim receives regular visits from Haven House’s Care team who provide play and music therapy sessions. The visits give him the chance to enjoy himself and can calm him down if he’s feeling distressed or unwell.

The visits also mean Samina can have a vital short break to do the most basic things like the dishes, tidying up or just having five minutes to herself - tasks which are difficult when caring for a child with a life-limiting condition.

Despite constant uncertainty about his future, Samina remains optimistic and draws strength from her faith.

She says:

Without my faith I wouldn’t be able to survive. When I’m feeling down, I pray and it helps me get through the day. I look to my son and think, ‘He’s going through all of that and still fighting, playing and being cheeky!

Samina concludes:

His name is very important to me as he bares the name of two of our prophets. Despite everything that he has faced, my son is still here fighting and I will keep fighting for him.

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