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Harry’s story: “They taught us to focus on the depth of life, rather than the length”

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A blonde-haired boy smiles at the camera. Wearing a blue shirt, he is holding his hands together in front of himself.

Our eldest son Harry was diagnosed at the age of 17 months with Spinal Muscular Atrophy. The diagnosis came entirely out of the blue and meant that our other children, male or female, had a one in four chance of having the same condition.

Following the diagnosis, we were fortunate enough to be introduced to Helen House Children’s Hospice (now known as Helen & Douglas House). We were offered 30 days of respite care every year and emergency care at any time of the day or night. We also received two 90-minute sessions of help from social services each week.

A home-from-home for the whole family

To this day I don’t know how we would have coped if we had not been introduced to Helen House. They had a wealth of expertise and were deeply perceptive and intuitive. Helen House not only became our main source of medical care, but a home-from-home for us all.

We discovered during our first few visits it was up to us to use Helen House exactly as we wished – we could lead the way.

Some families prefer to leave their child with the staff while they get on with things they can’t normally do. We just loved staying there as a family. Being able to hand Harry’s care over to the professionals allowed us to enjoy spending time with our children and to be parents, without having to worry about medicine, enemas or physio.

Our three children loved it there too. They thought of it as a wonderful hotel totally geared to children and with every toy imaginable on offer! It was heaven for them, especially since they didn’t have the extra knowledge of what it represented; they could just enjoy their time there without the emotional baggage associated with the word ‘hospice’.

A boy sits in his wheelchair in the garden. Behind him is a high stone wall.

Reflecting back over two decades later

24 years on from Harry’s death there, I can now look back at everything we gained from our time at Helen House. Aside from meeting other families and realising we were not alone, we received incredible end of life and bereavement support. Not only did the team help change our perspective to focus on the depth of life rather than the length, but they also supported us for years following Harry’s death.

I can honestly say that I do not know where I would be today without the help we received over those years.

It’s for this reason that I am deeply saddened to hear that many seriously ill children and their families are not able to access the care and support that we had.

Being able to spend quality time as a family during those years, with expert medical care and emotional support, was a lifeline. That’s why that I am passionate about Together for Short Lives’ five ‘must-do’s’ for the next UK Government ahead of the general election, and their ask for people to sign an open letter to the next Prime Minister. With Children’s Hospice Week next week, there really is no better time to support this cause.

No one should have to experience the death of their child alone. This election is an opportunity to change that and ensure that seriously ill children like Harry and families like mine get the care and support they need, whenever and wherever that may be.

Lizzie is a Speaker, Grief Investigator, Film Producer and Author of ‘When Grief Equals Love’. More information can be found on Lizzie’s website:

Three children smile at the camera. (L-R) a young girl stands next to an older boy. Next to him is a young boy in a wheelchair.

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