Why not read some of our stories below:
Emily's parent's said:
''Emily was born on 14.10.2014 with a normal delivery and we had no idea Emily had anything wrong. She appeared as healthy as any other child when born and we went home in less than 24 hours and carried on as normal.
When Emily was just 1.5 weeks old she started to go blue around her mouth when being fed but once she was sat up and her back patted she would be fine. Hospital was informed yet we all thought it was reflux.
A week later she then did it when she wasn't being fed and her eyes were fixed and she was going blue. We rushed her to hospital where she was rushed off, put on oxygen and went for a CT and MRI scan. We were then informed that her brain was not fully formed, both hemispheres were underdeveloped and her corpus collosum was missing.
The doctors were unsure why or if there was a diagnosis other than epilepsy. She started anti epileptic drugs immediately. At 4 month old Emily started to have treatment for infantile spasms on top of her epilepsy then had an eye test which showed she had Chorioretinal Lacunae which are holes in the back of her eyes.
With all of these Emily was diagnosed with Aicardi Syndrome, a rare life limiting condition, only 4000 girls are known to have this worldwide and 1 boy.
Due to her syndrome, Emily requires a lot of help and care. Emily is registered as blind, she is unable to walk and talk and has no head or trunkal support. She is fully tube fed and is unable to have anything by mouth. She also has uncontrollable epilepsy and seizures on average 20x daily but with 24/7 constant background epilepsy.
Emily struggles to communicate, play or grasp toys and objects. We have been told by doctors that they will do their very best to get her to her teenage years. On top of all of this Emily is a strong, beautiful girl who has anyone who meets her fall in love with her.
We were told about Zoe's Place from around the same time as her diagnosis but we refused to accept any form of help, as to us Emily was no different to any other newborn who would keep us busy and tired, so we didn't see why we needed anymore help than any other parent.
When Emily was 9 month old we were asked again and accepted to look around with the expectation that we would not like it and refuse it, however we loved the look of it, it was so homely and warming and everyone seemed welcoming. All the children there seemed happy and content. We agreed to let her go for a few hours.
We missed her but seeing just how contented she was we then agreed at a later date to an overnight stay. Again Emily was comfortable and happy and we were too as we were able to come and go as we pleased and were able to call at any point in that 24 hour period no matter what the time.
Sleepovers increased and now Emily attends 2 nights per week. She settles really well there and you can see she is as comfortable in Zoes Place as she is at home. Her sister sleeps at her Nana's regularly and Emily has hers at Zoes Place, its a home from home. While Emily is in respite she gets pampered, she has her Jacuzzi bath with music and lights, she has aromatherapy massages, she is included in music, stories, days out and arts and crafts.
She gets everything she needs all round. When she is in respite we get to sleep longer and earlier, we get to catch up on housework, shopping and have the ability to take Emily's 8 year old sister to places we are unable to take her to when Emily is home due to either issues with seizure triggers or due to places not being disabled friendly.
Zoe's Place also includes the whole family with days out, nights out and sibling treats so all round it not only takes care of Emily but for us all too and we will be sad when it is all over in less than 2 years, there wont be a place out there that will offer the same help that Zoe's Place does.
Jorge is 2 years old and he started to come and stay with us when he was a few months old. He has been diagnosed with cerebral palsy and epilepsy meaning he is totally dependent on the nursing team to care for him throughout the day. He has developmental delays, some visual impairment and he requires feeding through a special tube inserted in his tummy.
Jorge visits the hospice every week and he loves sensory play, messy play, touch and listening to singing. He has regular physiotherapy to help him with his development. He loves cuddles! Whenever he is staying with us he always lets us know he is happy with his gorgeous smile!
When I asked his parents what Zoë’s Place means to them they replied as follows:
“Zoë’s place has really been a god send to both Jorge and us as a family. The staff are amazing with Jorge, and he gives plenty smiles away when he's there which says it all and makes the difference for us knowing he's in such good hands. The support Zoes provide is first class, their main focus is on the children to ensure they are comfortable and happy. They are always reliable which means we have chance to recharge and take a step back for a short while as Jorge needs 24/7 care and support. We really couldn't do without Zoes place. Thank you so much! Xx”
Connie is four years old. She was born 14 weeks early and spent time in the neonatal unit. She has a hearing and visual impairments and she is developmentally delayed. She has a cleft palate meaning she is unable to feed orally therefore she has a gastrostomy fitted so that she can be fed through this. She suffers from sleep apnoea so she needs to be supervised throughout the night.
When Connie comes to the hospice we know she loves lights, all kinds of lights!
She enjoys playing peek a boo with her blanket and loves cuddles. She likes to shout and make a noise with her toys which means she is not often quiet!! She doesn’t like people to put things into her hands as she likes to take her time and pick them up herself.
She loves bath time and splashing around. Connie is a very happy little girl who does not cry very often.
This is what Connie’s mum told us when she was asked ‘What does Zoë’s Place give to you’?.....….
“It doesn’t feel like I am leaving Connie with strangers as Zoë’s Place feels like an extended family to me. It is a place where we can leave Connie to have fun with her friends. It allows us to spend some quality time with our other children whilst not sacrificing her happiness at all. I never worry about leaving Connie with the team at Zoë’s Place.”
Charlie is 3 years old. He attends the hospice two nights per week.
Charlie was born with congenital heart disease. He had bilateral cerebral infarctions whilst in hospital and he has developmental delays. He needs to be fed through his gastrostomy tube. He has postural scoliosis and needs to have daily physiotherapy to help with his muscle tone and to help him move positions.
Charlie enjoys sensory play with music and feeling different textures. He loves ‘tummy time’ laying across a wedge and listening to music. He loves cuddles and being talked to during the day.
We encourage Charlie to spend time sitting in his special chair with toys and different textures placed in front of him.
This is what Charlie’s mum told us when she was asked ‘What does Zoë’s Place give to you’?.....….
"It gives us chance to have some normality as Charlie has so many special needs most of our time is spent caring for him. It allows us to catch up on well needed sleep and to enjoy time together with other family members.
We know that Zoë’s Place has helped Charlie with his developmental progress and we feel confident that the team provide Charlie with lots of wonderful care and attention.
Zoë’s Place embraces my whole family and cares for us in lots of ways. We enjoy attending the parents group and the support we get from all the team."