'Give hospices legacy in wills to help them survive'

Aqsa's father said gifts in Wills make hospice care at home possible

The family of a girl with a rare bone condition is calling on people to leave legacy gifts in their wills for hospices.

Two-year-old Aqsa has hypophosphatasia, which limits her ability to make enough calcium, leaving her bones very weak, and requires complex care including a ventilator, trachea management and regular injections.

Asqa and her family are supported at home by Bristol-based charity Jessie May, which has 14 specialist nurses funded through gifts in people's wills each year.

Aqsa's father Ikhlaq said: "Gifts in Wills make this care possible, ensuring children like Aqsa receive specialist nursing at home, surrounded by love and familiarity."

Urging more people to consider leaving a legacy gift in their will to support hospices, he added: "People will remember this person helped a hospice, it will go on forever."

Aqsa had to have a tracheostomy when she was born to allow her to breathe

According to data from This Is Hospice Care, 67% of residents in Bristol say hospices deserve greater support but fewer than one in four have considered leaving a gift in their will.

Aqsa's rare condition means her life - and her family's - has been filled with hospital visits and specialist care.

Ikhlaq said: "She's so fragile that any little mistake like holding her too tight... could basically break her."

She is currently receiving "expensive treatment", without which "she wouldn't be alive right now", Ikhlaq said.

"The more action the better. Leaving something in the will is not something like a one-off. It will be remembered in longer-term."

Unlike the NHS, hospices are not fully funded by the government and rely on charity contributions to survive.

In July Health and Social Care Minister Stephen Kinnock announced £75m to be shared by 170 hospices across the country.