Ivy Allen’s family are holding a fundraiser for thechildren’s hospice that provides ‘safe haven’ breaks for the six year-old
There can be no doubt that life is difficult for the Allen family of Bransholme. Much of the space in their two-bedroom council house is devoted to the care of six-year-old Ivy, who has complex medical needs.
She has to live downstairs, her mum has not been able to bath her for almost two years, and Ivy’s 14-year-old brother, Josh, has to spend much of his time in his bedroom because there is generally no other space where he can be.
Many of Ivy’s regular care interventions need to be carried out away from the property, for lack of space or in the interests of safety. Despite a long-running dialogue with Hull City Council about the family’s circumstances and their desperate need for somewhere bigger that is adapted, or can be adapted, for Ivy’s needs, the Allens battle on.
Although Betsy and husband Danny were told to prepare for Ivy’s death two-and-a-half years ago, with no more treatments available on the NHS, she is still here. The family are currently fundraising for Martin House Children’s Hospice, which provides a “safe haven” to enjoy a break while the Allens have respite from managing her condition.
Betsy said she hoped as many people as possible would turn out for the family fun day they have planned for Tuesday, August 19 – there is also a GoFundMe appeal page. The fundraiser starts with a wheelchair-friendly sponsored walk from the Falcon pub, in Falkland Road, setting out at 10.30am, returning to the pub at noon for four hours of food, stalls and entertainment.
Betsy said: “Martin House is a fantastic hospice. They have been really, really incredible in helping us with Ivy.”
The hospice, based in Wetherby, provides family-led hospice care free of charge for children and young people with life-shortening conditions, including those from East Yorkshire. Betsy said: “They are having a major refurbishment there to be able to cater for the needs of children much more effectively.”
The fundraiser will include a bouncy castle, a sponsored hair shave, face painting, a raffle and more. “We’ve been overwhelmed with the support we’ve had so far,” said Betsy, who is hoping to raise £3,000 from the event.
“We’ve had loads of help from Ivy’s personal assistant Ellie Crooks – she’s my wing-woman – who has been running around and linking up with people and picking up raffle prizes. We have about 20 vendors running stalls and Harrison Solway (a Hull-based logistics firm) on board and B&M have provided some sponsorship.
“Any help or donations would be greatly appreciated and will help us to support families and children who use this facility. Raffle prizes are also a big help no matter how big or small they may be.”
Ivy was born at 34 weeks with a super-rare genetic defect, a deletion of chromosome 7q in her DNA, a condition so rare that her family had failed to identify any other cases of it happening anywhere else in the world even by the time she was nearly three. As well as the chromosomal abnormalities, Ivy was also born with a condition called Agenesis of corpus callosum (ACC) – a congenital defect which means she does not have the structure which connects the two sides of her brain.
Those issues mean Ivy has to be fed via a feeding tube and requires round-the-clock care. Betsy said: “She is good, at the moment, although she just had a little stay in hospital.”
Her mum said: “We’ve been waiting for adaptations but because our house is rendered it fails the adaptations/extension process. Ivy lives downstairs with no access to a bathroom – she’s not had a bath for 19 months.
“The local authority don’t seem to be able to move us to another house. We need to find a property with the extra space for those adaptations, but there is no such thing. I am constantly on the phone about it with the council.”
A spokesperson for Hull City Council said: “The council empathises with the living situation that the Allen family is experiencing. The family has recently been awarded a very high rehousing priority and vacant properties have been identified for them since the award was made.
“Unfortunately, the properties matched so far to the family have not been suitable for the physical adaptations that are required to meet their needs, following assessment by an occupational therapist. Officers will continue to work with the family and are optimistic that a suitable property will be identified.
“In the meantime, the council urges the family to be as flexible as possible in terms of their rehousing considerations to enable a speedier resolution to be found.”