I wish you knew...

I wish you knew how dramatically my views have changed about children’s hospice care. Don’t get me wrong, I’ve always had huge respect and admiration for the work that goes on in these incredible places, helping families in their hour of need...

I wish you knew how my son’s short-break care makes the most enormous difference - both for him and us, as parents. Henry, 13, has a very rare genetic condition that was only diagnosed when he was eight. Among many complications, it means he has severe epilepsy and profound learning difficulties...

I wish you knew how much I love going to The Treehouse. My name is Ella, I’m eight years old and I have a very rare genetic condition, which means I have regular seizures...

I wish you knew how much comfort, guidance and support I would get from EACH, while my grandson received care at Milton. It’s not something I expected, as a grandparent, but to benefit from the kindness, knowledge, help and wisdom of so many incredible people was an absolute blessing...

I wish you knew how comforting and invaluable bereavement support groups are. In my opinion, it’s one of the most important things EACH provides. That aftercare is just as important as end of life support. It goes on forever. It’s never ending and something we, as a family, will always be grateful for...

I wish you knew that without EACH, I wouldn’t have coped or got through the death of my son. I’d hit rock bottom. My world was crumbling around me and the only thing that kept me going was the support I received from our counsellor, Andy Jaggard...

I wish you knew the depth of love and longing I carry for my daughter, Tallulah Irish, who was with us for just 19 days after being born by emergency caesarean in November 2013...

I wish you knew that a children’s hospice isn’t a place to be scared of but a haven of peace – somewhere joy can be found and cherished memories created...

I wish you knew how difficult it can be getting out and about when you have a child with profound disabilities. Euan, our 16-year-old son, has a life-limiting degenerative condition and uses a specialist tilt-in-space wheelchair which is rather large. Wherever we go and whatever we do, accessibility is always at the forefront of our minds...

I wish you knew how hurtful and damaging people’s misplaced words can be, when dealing with grief. My son, Amali, died when he was four and a half, in September 2020. He had a severe neurological disorder called Leigh syndrome and received incredible end-of-life care at The Nook...