Chloe is 15 and has Aicardi Syndrome, a condition which mainly affects girls. As a result Chloe suffers from infantile spasms which have now developed into drug-resistant epilepsy. She is developmentally delayed, suffers from scoliosis, is partially sighted and oxygen dependent – she is also a wheelchair user and requires overnight pressure support. Chloe is completely non-verbal and requires 24/7 care which is provided by her family in Halifax.
Chloe lives with her Mum, Dad and brother and is visited by a carer once a week who takes her out for ‘girly days’ which usually includes the cinema, shows and shopping.
The family rely on the support they receive from Forget Me Not Hospice: “We were put in touch with Forget Me Not Hospice even before the building was built in 2009,” says Mum Mary. At first the family received home care to help with the demands of caring for Chloe 24/7 but now the family use the hospice for respite stays throughout the year, as well as attending music therapy sessions and hydrotherapy. The hospice has also setup a choir for staff and families which Mum Mary enjoys: “It gives me some much needed me time.”
“The staff at the hospice have got to know Chloe so well, which is really important to me. They are absolutely wonderful with her.” At first, Mary was nervous leaving her daughter at the hospice but now knows she can truly trust the staff to provide the best possible care to her daughter.
When Chloe was young, the respite stays allowed the family to spend some one-on-one time with their son, now Mary and her husband use the time to have special date nights. “We are confident leaving Chloe at the hospice for an overnight stay now, so we use the time to just relax in each other’s company which isn’t something we get to do often. It’s really special.”
Chloe and her family have been shielding since 11 March: “Chloe has suffered several severe seizures during lockdown but is doing better now. Even though lockdown is hard, we have really enjoyed being with each other but very much miss my son who had to move out to protect Chloe as he is still working. My husband is working at home at the moment and so I provide most of the care throughout the day.”
Forget Me Not have been supporting the family during this time, regularly dropping off activity bags: “Our most recent bag contained rocks and pens to decorate. It was something different to do, we really enjoyed it.”
Sadly, the family’s recent holiday was cancelled due to the pandemic, which has been tough on them all: “I have been very upset about not being able to go on our holiday, because it is a really special time for us as a family. The hospice dropped off a special activity bag and a note which said “YOU CAN DO THIS” and that’s just what I needed to read. We can do this.”
To the family, the hospice are a huge support: “All of the staff at the hospice are just wonderful, we have really appreciated their support during the lockdown. It has meant a lot.”