floatingbaker

Let's talk about Cystic Fibrosis treatments

As you may know my son Vincent has Cystic Fibrosis. It is a genetic condition that affects his lungs and digestive system. We found out that we were carriers when Ariadne died as she had it too. When meeting the Cystic Fibrosis team about it we were told that a new life-saving treatment had just come out. We were told that nowadays having Cystic fibrosis was like having diabetes. It is the Only treatment for CF. It adds about 30 years of life expectancy to children with the condition.
The N.I.C.E is now reviewing the drug and about it to remove it from the NHS. This means Vincent wouldn't have access to the only drug that would mean he can grow like an other child and be a healthy adult. Luckily this isn't the case in France but we feel very strongly about this decision in the UK. The only reason of the review is cost. And frankly we're bored seeing price tags on our children's lives. I am very aware of the privilege I have to being able to access the treatment from where I am. But treatment access should NOT be a privileged for the ones who can afford it privately or move away. This is threatening hundreds of lives. And we are talking about children.

Could you please sign this petition and share it with as many people as possible.

https://petition.parliament.uk/petitions/650674

6 months in France 🇫🇷!!!
We have left the UK half a year ago already. Time flies really. And it feels like we have done so much slowing down, settling in and building routines. A few things that happened:
🍼 Vincent is here and is lovely
🍩 is absolutely nuts
🏕We made wonderful friends in the south of France
💕 Vivienne started school in the middle of the year not speaking French and 3 weeks later she was fluent
🍽My fridge will never be big enough
🧨We started redecorating the flat and haven't finished
🎊 I'm doing a Cap patisserie so I can work here

A few truth about boat life. It was amazing when it was the 2 of us cruising the canal network but it became a full-time job with children. It's constant work. There isn't a day when you can just laze around casually because that will be the day you ran out of water, need to move the boat and empty the toilets. It was hard work to keep good standards of hygiene. It was hard work in general.

🎊✨️⚓️⚓️Hope is now listed for Sale!

Narrowboat Hope is a 57ft, 2005 built Narrowboat. It has been the home of the Floating Baker, a vegan French bakery. It has a fully 5 star rated commercial kitchen and is ready for a food trading business on the canal with an electric set up allowing continuous use of kitchen appliances, double sink, cleanable surfaces. It also comes with a display shelf and a selling hatch. There is an absolutely beautiful roof steal painted signage and a couple of painted menu boards. Specification for the Boat is below. We are looking to secure a buyer with an initial deposit, and balance ahead of completion.

This boat is very well cared for, and stunning throughout. It has been our home for the last 5 years. We have made it extremely comfortable for continuously cruising. It has an extraordinary amount of storage through out and a huge water tank. The internal head height is 6’6” in the middle which allows tall people to stand straight. Hull surveyed, blacking and BSS have been all been done in February 2023. This is the ideal boat for live aboard and trading.

The boat was featured on The Cotswolds with Pam Ayres.

External:

57 ft Semi traditional Shell.

Bow and Stern Lockers

Custom Made Cratch cover and Iroko Cratch board.

Custom Made bakery signage

750w Solar 2 tilting panels with custom built steel brackets.

Pole and 2 x Plank.

External LED Bow tunnel light.

Unique Design Stern and Cratch Covers.

Intertuff 16 Bitumen Coating (below waterline)

4 Piece Mooring Line (bow and stern center line x 2)

6 x Mooring Pin

1 x Lump Hammer.

Fenders

Smart cat flap.

Internal:

Spray Foam Insulated.

1000 Litre Water Tank.

Beta Marine 38 HP Engine

Autoterm Diesel Fired Central Heating System.

Salamander Hobbit multi-fuel Stove With Back boiler feeding 2 radiators.

⚓ More info on Appolo Duck🔗
https://narrowboats.apolloduck.co.uk/boat/cnm-57-semi-trad-for-sale/727032