Jen, Flo and Riccardo’s story

“Flo is 11 years old and a real character. She’s got a cheeky smile and a great sense of humour and she absolutely loves socialising and taking part in all of the activities at Francis House. When she was a toddler, her development kind of paused – she was able to take a few steps and say a few words, one of those words was ‘Cardo’, her brother Riccardo’s name. And at two and a half she was diagnosed with a life limiting regressive condition called Late Infantile GM1. She’s not able to walk or talk and she needs 24/7 care.

When Flo was diagnosed, we got launched into this world and told to go home and make memories. Someone told me about Francis House and I remember ringing up in tears and telling them my story. They invited the three of us to come for lunch – I expected it to be really clinical and look like a hospital, but it’s really not.  It immediately felt like it was a home from home. It was calm and full of love.

Francis House are there for Flo of course, but also for me as a mum and a person, caring for my daughter. They’re there for Riccardo too, a teenager and a brother who has to deal with everything that comes with having a sister who has a life limiting condition.

It’s a place that we can all go to for a break and a change of scene – it’s a special place that we couldn’t live without.

When we first used to go, we’d all stay in the same room. I was scared to leave my precious cargo with anyone. Flo needs 24/7 care and a lot of looking after as she’s peg fed, through her tummy. The clinical care is brilliant but Francis House is so much more than that. Flo knows everyone so well. And they really know each of us. Flo always sleeps so well when she’s there, she’s so happy and loved there.

She’s so busy and has all these lovely experiences

Flo’s really sociable and loves other children. She smiles at everyone and she’s nosy and curious. She gets to do so much when she’s at Francis House. People don’t realise how much time she spends getting out and doing things. She’s been to Blackpool to the Sea Life Centre and she touched a star fish. She went on a scarecrow trail, she goes for walks locally – she absolutely loves going to Tesco and having the basket on her lap! She loves cooking and she can operate the switch with her head and get really involved. She goes in the jacuzzi and has so many lovely experiences that I can’t give her at home. She went to a festival recently and saw Mr Tumble. And she loves Oli and Billy, the play specialists – just hearing their voices makes her face light up!

She gets to do so much stuff. She has a busy week at school but gets bored at home. At Francis House she’s so busy and has all these lovely people and activities. When she comes home after a few days at Francis House, you can see in her face how much fun she’s had.

They take as good a care of Riccardo as they do Flo

Riccardo was six when we first started going to Francis House and he absolutely loves it there. It can be hard for him as a brother because Flo needs so much attention. But they take as good a care of Riccardo as they do Flo. There is so much support and opportunity available to him. He gets to be around other siblings and there are dedicated people to look after him and give him the same opportunities and experiences as Flo. He goes to the cinema and they take him to Five Guys for some food. And he’s mixing with other siblings, so they get to talk, share and support each other in a very low key way.

Riccardo gets spoiled there. He loves his food – they have two chefs who will cook anything he likes! And he gets to go out and do the things a 14 year old wants to do. They take him to the Trafford Centre, they’ll make hot chocolate and bring it to him in his room before he goes to bed. It just gives him the time and space, with one-on-one support, to do what he wants and to be himself.

He goes to the sibling group on a Saturday, as they have a very structured sibling support set up if that’s needed. He can have 1-2-1 support and counselling if he wants. It’s very much led by the sibling. What works for Riccardo is just being around other siblings, sitting around the big dinner table and being able to talk to people who are experiencing similar things as him. It’s very informal, they can all talk while they’re playing a game or hanging out with other brothers and sisters – it gives them an opportunity and the common ground, to share and understand with each other.

I rely on him and as he gets older, I’m honest – we don’t know how long we’ve got with Flo. It’s made him a more responsible person, and I know that everyone at Francis House are there for him, they really care about him.

I’ve got lots of friends, but the families and people at Francis House understand

They’re there for me, as a parent too. I haven’t had any formal counselling sessions, but I know it’s there if I want it. Often the support is more informal and spontaneous, whilst we are doing something else, we can just talk. They know me so well and everyone’s so patient and willing to listen. The people who work at Francis House are very special and incredibly kind, they always have time for me too.

Being a parent of a child with a life limiting condition, means the support from people who know what we’re going through is really important. I’ve got lots of really good friends and family, but the families at Francis House are on the same journey as us. They really get it and they understand. Sitting around the big table, where everyone eats together, you are part of a family that listens and understands.

They do so much for me. It’s respite and a break, where I can rest and recharge, knowing my family are being looked after. It’s almost like a hotel with lovely apartments and bedrooms with en-suites and a kitchen. Chefs are ready to cook whenever you are hungry, all of your laundry is sorted out and you can come and go as you please. I have massage therapy sometimes from one of the care team who is a trained therapist before I go to bed, which helps me wind down and sleep.

For the first time this summer, I went away with my mum to Warwick. Knowing that the kids were safe and happy meant I could properly switch off to spend some time with my mum and have a few days break.

It’s a special place that we couldn’t live without.

Francis House is a real safe haven, filled with love. It’s a very special place that Me, Riccardo or Flo couldn’t live without. You could be going through a really difficult time, and it gives you a chance to breathe. I’m currently training to be a counsellor and Riccardo says that when he grows up, he wants to be a chef at Francis House. That’s how much it means to us.”