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                                    Meet Daniel....


Daniel has an extremely rare syndrome called NOCGUS syndrome. He is one of only nine individuals reported with this. Most who have this condition are unable to speak, walk or eat requiring round the clock care. The condition affects areas such as the brain, heart, eyes, ears, chest and more.

“It’s not easy to get your head around something like this,” Lisa discusses the moment they received their lifechanging news, “and I don’t think we will ever be ok with having a child with complex needs but I guess you just learn to live with it. It’s like a grieving process; that’s the only way I can explain it."

The stress of lockdown, and family life, alongside Daniel’s complex needs played havoc on the families’ mental health, causing her major anxiety. “I think it would be quite easy for families to go downhill in terms of mental health, if they didn’t get that respite, I know I would go downhill that’s for sure. Zoë’s Place really does keep us afloat!”

“When the hospice was first mentioned, I remember bursting into tears thinking why has my gorgeous baby boy got to go to a hospice. I didn’t realise at that point how much we were going to need Zoë’s Place and how much we rely on them! They mean the absolute world to us!"


Since visiting the hospice for the first time, their thoughts and feelings massively changed. 

"We were blown away with how lovely and welcoming all the staff were. When our son visits the hospice, we can get a full night’s sleep and re-charge our batteries, and do things with our other children that we simply would not be able to do if he was with us.

The hospice doesn’t just look after our little boy; it involves the whole family and helps our other children see how special the place he goes to is."

There are lots of ways you can help to support our special babies, just like Sophie. Whether it is a making a donation, signing up to a fundraising event or coming up with fundraising ideas of your own, it will all help to make a huge difference. Find out how you can help by clicking below...