Daisy Newman is eight years old. She has cerebral palsy and various other conditions meaning her life is currently confined to her family home in Carlton Colville, near Lowestoft.
Staff from EACH visit Daisy, her mum Joanne, dad Wayne and sister Gracie, 11, to offer care and support for six hours twice a month.
Wayne says they “couldn’t imagine how hard it would be” without EACH, but we will be able to do so much more for the Newmans now we are moving to The Nook, our new hospice in Framingham Earl.
Daisy cannot swallow and therefore has to be fed through a tube. Medicines and milk need to be given carefully as reflux can cause her to vomit.
She also has excessive secretions that need to be suctioned regularly by a skilled carer, which is one reason EACH is so valued by the family.
Daisy has breathing difficulties, too, and every few weeks will actually stop breathing every hour for up to 18 hours. Keeping her airways clear requires constant repositioning and when her saturations drop she needs oxygen.
In addition, Daisy has physio twice a day to help relieve discomfort in her muscles and joints, particularly her right hip, which is dislocated due to the joint not forming correctly. She has gone years without seizures but they could still return.
As Daisy has very little control over her limbs she cannot play independently, instead requiring someone to understand her noises and movements and help her make her own decisions.
Wayne explains: “If it wasn’t for EACH we wouldn’t have a break. This is the only time we leave Daisy alone. We couldn’t imagine how hard it would be without the time they offer and value it very much. EACH has also given us the chance to spend a small amount of time with Daisy's sister. Gracie has gone through a lot and never complains. It’s lovely to take her out for the day and just focus on her needs.”
Gracie attends Carlton Colville Primary School. Daisy used to attend Warren School, but is now being home-schooled due to her health.
Wayne says: “Daisy struggles with journeys in the car and travelling to Quidenham has proven difficult – it’s just too far out. We’ve had two people care for Daisy in our home for the past six years or so.
“Daisy will be able to visit the nook, though, as it’s in a less remote area. We’re looking forward to having her explore more than her own house. The interaction she’ll have with others will help her explore her understanding of life.
“The facilities at the nook will be perfect for Daisy, too. Hydrotherapy is something that’s helped her to relax and have a moment’s respite from the tightness of her muscles. We’re currently not receiving hydro and we’d love for Daisy to have access to such a wonderful facility.”