Weʼre raising £500 to To raise money for an amazing children’s hospice. Little Harbour Hospice is based St Austell in Cornwall south west England.
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My stepson Daniel was a total free spirit, he made up his own mind and was determined in everything that he set his mind too! And at 5 years old I think thats pretty amazing.
Daniel (or Danny as we used to call him) lived in Plymouth with his mum and brother. My self and Danny’s Dad live in County Durham so unfortunately we didn‘t have the privlige of seeing him every day. July 2017 we received a phone call which would change our lives forever.
Daniel had recently been for a routine eye test and he appeared to have developed a squint, as this had come on pretty quickly Daniel was referred for a scan, this scan would find the growth which had began to grow on Daniel‘s brain stem.
Daniel was rushed to Bristol Children‘s Hospital where more tests and scans were done. Daniel was diagnosed with DIPG (Diffuse intrinsic pontine glioma) in August. Doctors told us the average life span when diagnosed was around 9 months although radio therepy was suggested to help slow down the speed the tumor was growing. Daniel went through 8 weeks of this treatment at Bristol, we found it slowed the growth a little but not by much.
The next few month appeared to be abit of a blur, with regular weekly visits we watched Daniel change before our eyes each time we seen him. His face began to change significantly and the steriods had fully took hold. His co ordination and bodily function control appeared to just disapear, the little boy we knew and loved was beginning to disapear before us.
Little Harbour Children’s Hospice
By the end of November Daniel’s care was beginning to get harder to deal with so Daniels mum decided to visit the hospice and see about Daniel going for some rest bite to give mum some help. Danny settled in really well and by the middle of December Daniel, his mum and older brother had moved into the hospice as he now required full time care in all aspects of his life.
This place is amazing! The facilities are brilliant and the care and attention the staff show is just mind blowing. The hospice has huge grounds which includes beautiful gardens, play park, soft play area, sensory room, jacuzzi, arts and crafts room and I think the biggest tv in a play room I have ever seen!
There is so much interaction and things to do no child could ever be bored here! That includes siblings also, there are unique carers on site simply just to look after and care for the siblings who also have to stay in the hospice. There are days out organised often, trips to the cinema, pretty much anything these children want to do it can be arranged. This also includes meals and snacks, the kitchen/dining room is so warm and welcoming, such a lovely place to sit, relax and reflect on your surroundings. It prety much stocks anything you would want or need and if they dont‘t have it they will be more than happy to go and get what ever you fancy, this includes trips to Macdonalds and KFC if requested by the children ( and sometimes the parents).
With my self and Daniels dad living so far away and visiting as much as possible the hospice were also kind enough to find us free accomadation very close by so we could be as close as possible incase we were needed. Mum and Daniels brother had their own room upstairs in the hospice and pretty much could do as they pleased when they liked, it really was a home away from home.
Daniel was pretty much bed bound now, we could barely understand his speech but up until now he had smiled, every single day, might not of been all day long but you could still see the happiness in his face that the staff brought to Daniel, he certainly had made an impression on them all.
Unfortunately Daniel lost his battle with DIPG in the early hours of the 4th of Febuary. He fought the good fight for over 200 days, he smiled everyday until the last day.The support and care we received through this awful time was truly amazing, everything was taken care of by the hospice staff including the cost of Daniel’s funeral.
In this last year since Danny’s passing the hospice have kept in regular contact with us woth help and support. So much so we have visited the hospice twice now to show Daniels step brothers where we kept going all those weeks. We plan to continue these visits, we always feel welcome and its so nice to go talk about Danny and the memories and impression he made on all of the staff at Little Harbour.
The Great North Run 2019
So the thing is with these amazing hospices all around the country, alot of them get no government funding what so ever, Little Harbour included. They do such amazing work with these terminally ill children and all of the families. We can not thank them enough for making Danny’s last few weeks as enjoyable as we could ever imagine. So I have successfully secured a place in the Great North Run to be held in Newcastle on the 8th of September and I want to raise as much as possible for this amazing place in the south west of England. Please please give what you can, we need this hospice to keep going for any other poorly children and their families which will desperately need their help.
Thank you x
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Caroline Downing started crowdfunding