Why not read our stories below:
Mason was diagnosed at the age of 7 months with Dravet Syndrome which is a rare debilitating condition which can cause prolonged seizures, developmental delay and sadly SUDEP. He first started having seizures at the age of 4 months. Despite everything life has thrown at him, he is a very happy, fun loving courageous little boy!!
Zoë’s Place aka our extended family, has enabled my family to function how we do.
Firstly, Zoë’s input has allowed me to have quality time with my eldest who also has the same condition as Mason. Secondly, I cannot express how I feel knowing Mason is loved and cared for at Zoë's like he is. The peace of mind is second to none!! Which means when Mason is at Zoë's, I can breath and totally enjoy my time with Jake knowing Mason is so happy, interacting with new friends in a very safe environment & medically he is looked after too.
If I could sum up Zoë's in a sentence it would be "they give so much, yet take so little".
What Zoë’s Means to Me and My Mummy…… Our Story.
Aedan is a very vibrant, warm hearted, charming little boy with the biggest personality, he always smiles and his eyes are bright. The simplest of things will make him giggle and with his angelic face, he is very cheeky and loves getting everyone’s attention.
Unfortunately since birth in 2012, Aedan’s journey has not been simple. Aedan has a very rare degenerative life limiting disease Pelizaeus-Merzbachers Disease (PMD Leucodistrophy.) PMD is a terminal illness for which there is no cure! It affects 1 in 500,000 boys with less than 1000 confirmed cases worldwide.
This usually begins to present itself at primary school age in which the boys begin to lose their motor skills which in turn leads to deterioration.
Aedan has a unique, rare mutation of connatal PMD. Regretfully this has meant that he was born with all the marked characteristics of connatal PMD evidently concluding he is already deteriorating.
Aedan’s symptoms are multiple, complex and he will develop additional symptoms along his journey. To explain a few he is solely fed through a gastrostomy tube and has no trunk or head control, he cannot sit up unaided or walk. He cannot hold on to anything for any noticeable period, he can move his arms and legs, however this can mainly be involuntary, he is extremely underweight due to reoccurring sickness and has spells when he struggles to breathe.
Despite his limitations though, Aedan fights every day. Every task may be difficult, but he goes for it with every effort, especially just for a reaction, to make the room smile or laugh. He is blissfully unaware that his time with us is precious and how poorly he is.
No matter how hard his body works, even just to breathe or attempt to sound the words “I luooovooo” he is one very happy little soul on one big adventure.
This journey cannot be walked alone, in addition to family and friends, Zoë’s Place has been a Godsend.
I am a single young Mum, when I first started my journey at Zoë’s Place I was very shy. It is not a world I have entered before and I didn’t quite know what to expect……… Perhaps an overwhelming feeling of sadness?? Definitely not!
Zoë’s Place is extremely warm, they welcome you with open arms, you kind of become a member of their family. The children are so happy and the care and attention they receive isn’t only loving, genuine and fun. It is professional, precise and handled extremely well dynamically. They are there through the good times and the bad times, whether that’s child related or you are just ready to pull your hair out and need a sit down with a cup of coffee, they accommodate and support you the best they can.
They have this gift that they know we are more in the know than they are about our child’s care. Aedan’s last very scary spell in hospital was the hardest time, we didn’t know which way it was going. Zoë’s place called every single day and staff visited. They ensured all our wishes in his end of life care plan were met. They kept mine, my family and Aedan’s spirits up in our darkest hour.
If I had to sum Zoë’s Place up in three words, they would be Hope, Strength and Normality.
I cannot thank the staff and the charity enough for what they do and continue to do for myself, Aedan and all the other children and parents.