Family’s farewell to Grace – the girl loved by everyone
NINE-YEAR-OLD WHO GAVE HER NAME TO HOSPICE PASSES AWAY
IT was the funeral of a much-loved girl. Grace Tinarwo Mazando was laid to rest at the weekend.
Her parents had been told she might live for only 24 hours.
But she defied the odds and was nine years four months when she died.
Two white horses drew her white carriage as close family paid their respects at a ceremony in her home town of Rochdale.
As well as a final farewell it was a reminder of how a much needed children’s hospice named after her had failed.
The ceremony was a poignant final chapter in the fate of Grace’s Place.
Grace’s Place in Radcliffe, Bury, whose patron was HRH Princess Beatrice, was due to officially open in July 2019 after its future appeared secure following five years of difficulties.
But days before a grand opening it closed for good due to a funding crisis.
It needed £1.2m a year to operate, and only a fraction of that amount has been raised.
At the time 17 children and families were receiving support from Grace’s Place.
After standing empty and unused for two years the hospice, in Dumers Lane, was taken over by Huddersfield-based charity, Forget Me Not in July 2017. By December that year it was providing services for a small number of families in their own homes. It opened in January 2019 for three days a week and alternate Saturdays for day care.
But seven months later the charity announced that despite the “tremendous goodwill and support” from the local community the cost of providing high quality care exceeded the funds it could raise.
All money raised in support of Grace’s Place was spent in either the set-up of the hospice or on care delivered to 67 families that have been worked with.
It had been estimated around 650 children, many of whom are terminally ill, from Bury, Oldham and Rochdale could benefit from Grace’s Place. The alternative is to travel up to 30 miles to get support.
HRH Princess Beatrice, visited the children’s hospice to meet local families.
Grace’s parents, Sarah and Cuthbert, paid tribute to their daughter.
Cuthbert said: “It was very sad when Grace’s Place closed. We felt it was a privilege to have her name used for the hospice. It was her legacy which was taken away from her.”
Grace was born with Patau syndrome. Due to her condition doctors warned her parents she may only live for 24 hours but she defied all odds.
She was blind, and was born with a double cleft lip and palate. She was non verbal, gastrostomy fed and was immobile.
Sarah said: “Grace had a form of epilepsy called Lennox Gastaut syndrome. It’s a rare form of epilepsy characterised by multiple and concurrent seizure types. The seizures had a great impact on her health which caused her to be admitted to hospital at times.”
Grace suffered a silent fit and then a cardiac arrest while sleeping. Paramedics and air ambulance crew fought to save her. She was taken to hospital but died five days later.
Cuthbert said: “Grace was a girl that was loved by everyone she came across. She was always laughing, smiling, dancing and bringing joy to people’s lives.”
Sarah added: “For us at home we called her princess because of the way she carried herself and also because she had shared moments with the Royalty in the form of Princess Beatrice.”