Our stories

Alfie Carlton

Alfie lives in Bassingham near Lincoln. When Alfie comes to the Hospice his whole family accompany him. He has a big brother Alex who is 17 and a younger brother Billy who is 5. Alfie has "Lennox Gastaut Syndrome" which results in developmental delay and epilepsy. Alfie loves music, cooking, swimming, and spending time in the Jacuzzi. He has no fear and so we make sure there are plenty of staff on duty during his visits to ensure his safety.

Darren Alfie's Dad says: "He's a very placid 6 year old but the size of an 8 year old, very demanding and a handfull! He adores school and being out and about but doesn't like the wind and rain! He loves sensory and tactile things and adores his time at the hospice……….as do myself and Carol! It is an absolute Godsend for us to have a couple of weekends away from it all. We can pay a bit more attention to Billy, Alfie's brother who sometimes misses out on things because of the constant demand that is Alfie! However he is a very understanding 5 year old who never complains or gets jealous".

Liam Nalder

Liam is 16 months old and was born prematurely. He was born with Pierre Robin Syndrome which affects his physical features and Liam also has a congenital heart condition, and so he has to have ventilation via tracheostomy 24 hours a day. He is also fed via a tube into his stomach. He requires intensive nursing care and so he spends 6 nights a week in hospital. He spends the day time and one night a week with his parents. He has to be monitored constantly as he is very vulnerable and susceptible to illness. His cognitive development is normal and he has only a minor physical disability due to the restriction of his movement because of all the monitors to which he has to be attached.

He spends one day a week in the Hospice to give his parents some respite. He loves the complementary therapies and the sensory room and yearns to be up and out and about. His Mum Rachael and Dad Steve say:

"The care at the Hospice is fantastic and Liam has really progressed in his development since he went to the Hospice due to the one to one care he receives."

Rosie Weatherill

3 year old Rosie lives in Cleethorpes with her Mum and 7 year old brother Cameron. She has a congenital heart condition and because part of her brain has not developed she has developmental delay and can't walk or talk. She does however recognise her Mum and smiles and laughs. When she visits the Hospice she enjoys all the sensory experiences, complementary therapies, listening to nursery rhymes and visits to the park to feed the ducks.

Thomas White

Thomas White was a patient at St Andrew's Children's Hospice from the age of 2 years. He was born in 2002 and complications at birth resulted in him being a very poorly child who spent much of his time in and out of hospital due to pneumonia and chest infections. On many occasions his family didn't think he would pull through but he was a tough little chap. In February 2010 the family had to make the tough decision to withdraw treatment in the knowledge that they were doing what was best for Thomas rather than clinging on to him at all cost for their own sakes.

Debbie, Thomas's Mum was a single Mum but surrounded by a very close family who all supported Debbie through the difficult times. The extended family used to use the Hospice for respite breaks when Thomas was alive and enjoyed taking the children to the beach and using all the play equipment at the Hospice.

Debbie played an instrumental role in establishing Hospice parent groups throughout the region - a group run by parents for parents aims to provide mutual support.

The Hospice staff will continue to support Debbie and the rest of Thomas's family for as long as they need our help.