Rosie’s Fundraising

This page is set up to raise funds for the Moncrieff family who are having an incredibly tough time at the moment. 

Lisa and Iain live near Bristol with their two beautiful children; Rosie, 7, and Reggie who’s just turned 2.

The aim of this page is to raise as much money as possible to help Rosie live a fuller, freer and more independent life and to help
ease the overwhelming burden on the family.

 

Rosie is a bright, fun-loving and cheeky little girl who loves all things Disney, telling jokes and singing her heart out. She also has Nemaline Rod Myopathy - a very rare, life-limiting form of muscular dystrophy. As such, Rosie has very weak muscle tone, is wheel chair bound and simply cannot do most of the daily activities that most of us, and our children, take for granted. Rosie has had many stints in intensive care during her life so far and due to her condition, even a simple cold can present with life-threatening symptoms.

Lisa and Iain are an inspiration to everyone who knows them.  They have - and continue to - rise to all the challenges thrown at them as a result of Rosie’s condition with the kind of strength, courage and positivity that many would struggle to muster. 

 

In June 2021, the family were dealt further devastating news. Lisa was diagnosed with stage 4 bowel and ovarian cancer at the age of 40. Lisa started 6 rounds of Chemotherapy on Wednesday the 18th of August. She is now awaiting major surgery to remove the tumour on her ovary. 

Lisa’s positive approach and mental strength in dealing with all this is just amazing.  (You can find out more about both Lisa’s treatment and Rosie’s journey on instagram @bowel_cancer_at_40 and @myweakmuscles) 

 

This family seem to take whatever the world throws at them in their stride. But the reality is far from easy.

This page has been created with huge amounts of love in the hope that family, friends and the wider community can help assist financially with additional issues Lisa and Iain are facing now Rosie is getting older. 

Any donations made will go towards the items on this ‘wish list for Rosie’ that the family have put together with Lisa’s sister, Rachel.

 

Things on this list include:

 

1. A fully equipped wet room and a room for carers to stay

The family has been given permission to extend their kitchen to create a wet room and a space for a carer to stay overnight. The build cost will be covered through a government grant along with some basic items like the shower. As the budget for the build is low and any fixtures and fittings will be basic any additional financial support would enable the family to provide Rosie with items that are really suited to her complex needs.

 

For the wet room:

- Shower and bed

- Electric toilet and sink so Rosie doesn't have to flush/turn the tap

- Heated floor
Estimated cost: £5,000

 

For the carer’s area

- Sofa bed for a carer to sit/sleep

- Linen, towels, lamp, table and chair

- Built-in storage for all the medical supplies/equipment Rosie needs

- Curtains
Estimated cost: £1,500

 

2. A voice activated home hub
(like Hive Hub & Active Smart Plug, or Apple Home Kit) to enable Rosie to turn on or dim her own lights.
Estimated cost: £150-£300

 

3. Rosie's bedroom

- Smart blinds/curtains (like poweredblinds.co.uk can be controlled by Rosie’s voice, remote control or an app)

- An electric bed which will allow Rosie to sit up or change position comfortably and enable Lisa, Iain or carers to turn her over or perform physio more easily.

Estimated cost: £1,000 for both

4. A special bike trailer
A safe, supportive bike trailer so that Lisa and Iain can take Rosie out along the seafront or on family bike rides. Rosie would feel so exhilarated with the wind rushing through her hair! It would also be a new and exciting way for her to enjoy the fresh air and see more of the world than she's currently able to in her chair.
Estimated cost: £1,295

5. An improved garden space  
The family has already adapted much of  their house for Rosie, but the garden space is inaccessible and uninspiring for her. Given Rosie’ condition, Lisa’s low immune system and the wider Covid pandemic, the family spend long periods of time at home. Creating a relaxing, fun and accessible garden space will make a massive difference to their wellbeing. 
 
Main improvements required include:
- Adding a permanent access ramp so Rosie can access the garden as and when she wishes
- A decked area and patio heater
- Raised beds so Rosie can grow and look after her plants, flowers and herbs
- A pretty water feature
- An accessible mud kitchen or playhouse so Rosie and Reggie can play together
- Laying an artificial lawn so Rosie can access the garden all-year-round
- A wheelchair access picnic bench/seating area.
- Lots of lovely sensory items like wind chimes, fairy lights, bright lanterns, a feather/bead/button curtain for Rosie to ride through
Estimated cost: £6,000
 

6. WACOM and computer
to enable Rosie to use a pen to write, draw and design on the computer as she's not able to press keys in the conventional way. Rosie is so talented and it would be wonderful for her to have an outlet like this to express her creativity.
Estimated cost: £2,000

 

Every penny of the money donated will go directly to the Moncrieff family for these things that will drastically improve Rosie’s quality of life, and the family’s too.

 

We are so grateful that you have taken the time to visit this page and a huge heartfelt thank you in anticipation of your generosity!