THE experience of watching a child you love battle day in, day out with an illness that you know will not allow them to see adulthood is one of the worst things any parent can imagine - never mind actually have to endure, writes Lindsey Alexander.
I know from watching a close relative struggle as a debilitating condition engulfed his young body and made him more susceptible to other illnesses, just how hard it is for parents to only be able to do the best they can.
But while you wouldn’t stop caring for them even for one second, there are times when the stresses and strains of constant caring become too much — for both parties — and this is where wonderful, yet vital, places like Rachel House in Kinross come in.
Run by the Children’s Hospice Association Scotland (CHAS), Rachel House was the first of its kind in Scotland to offer residential care to children with life-shortening illnesses, and their families.
It can be used for short planned breaks, emergency care, end of life support and bereavement services.
Now 11 years after it first opened its doors, Rachel House is as well used and loved as it ever.
Some 250 families a year take time out from their often difficult and strenuous lives to be looked after and supported by both medical professionals, caring staff and other parents in the same situation.
Designed to be a ‘home’ and not a medical environment, Rachel House has eight bedrooms for children on its lower floor and the same number of ensuite bedrooms on the second floor for families to stay in plus a living room, kitchen and garden terrace room where parents can have time to themselves.
There’s also a room where parents can enjoy a range of relaxing therapies like reflexology and massage, carried out by a team of volunteer therapists.
Children visiting Rachel House for short breaks get the very best care and access to a range of treatments and activities they could only dream of.
The large, welcoming communal area has a glowing fire at its heart, with a number of large, comfortable sofas for adults to relax in while their children are cared for.
Children, both those suffering from illness and their siblings, have access to multi-sensory games and books while a massive flatscreen TV, donated by Kinross Rotary Club, is ideal for children of all abilities to enjoy playing X-Box games.
Next to a long communal dining table, there’s an industrial kitchen made to look homely and which serves up, free to all residents, a range of home-cooked meals.
Teenagers also have their own ‘den’ with computers, games consoles, DVD players and other activities in a special room where parents aren’t allowed!
There’s also a soft play area which is due to be redeveloped to be more accessible for children with mobility problems, while a national £100,000 appeal backed by Miss Scotland, aims to raise enough money to create a much bigger teenage den complete with an outdoor decked area.
Also, on the main floor is a multi-use music room used for both therapeutic music sessions and also quieter storytelling time.
This floor is also home to the amazing ‘snoozelin’, a room full of multi-sensory and interactive features including fibreoptics, bubble pipes, coloured lighting, a waterbed, scent-diffusing fans and an entrancing infinity tunnel.
As well as working to stimulate children’s senses, this room also serves as a relaxation zone for parents.
Next door is a spa bubble pool, which again can be used by both parents and children requiring relaxation.
While very private, the spa overlooks Rachel House’s large landscaped garden.
Also, on the ground floor away from the hustle and bustle of communal areas, is the Rainbow Room, a bedroom and small living room used by parents following the death of a child.
Children can remain in the room for up to a week while parents say their goodbyes and make funeral arrangements.
All of this comes at a cost however, and CHAS – which has another children’s hospice, Robin House, in Balloch as well as a CHAS at home service run from Inverness – costs £6 million a year to run.
Only a small portion of income comes from the NHS and local authorities; most funding is the result of fund-raising events and this also means CHAS has more autonomy over how it spends the money.
On my tour of Rachel House, Hannah explained that contributions to CHAS tend to go into a general ‘pot’ but people can specify, if they wish, where they would like their money spent.
She explained one IT company had funded the cost of a state-of-the-art computer which can be used by all children no matter their ability, and even features five or six different computer ‘mice’ and can be set a varying height levels.
Hannah explained that very often people want to be able to quantify their donations.
“People want to know that their money has been used for something we really need, and it will be,” she said.
“We were lucky to get £50,000 from a golf tournament and this was spent on upgrading the kitchen.
“We spend £5000 a month on food, so you can work out how much we do rely on people’s donations.”
Hannah said that medical advances over the last few years have meant children with life-limiting conditions are living longer and so Rachel House is increasingly used by young adults as well.
“We still have babies and young children but we also have a lot more teenagers now and it’s important for them to be treated like young people who have very different interests and needs.”
As the sun shines in through the large windows its not hard to see Rachel House as the positive, warm and caring place it is but as we travel along the main hall a wall covered in photographs of children tells its own story.
With so many young faces smiling back at you its hard not to smile too, then Hannah tells me that each photo with a butterfly sticker shows that the child is no longer alive.
One photo is of twin girls, it has two stickers.
That is the harsh reality of why Rachel House exists and why people must continue to support it.
For more information on supporting CHAS visit the website www.chas.org.uk