Help Matilda overcome adversity to live independently

Matilda is a 16 year old girl who is a manifesting carrier of Duchenne Muscular Dystrophy , which is a life-limiting condition involving muscle deterioration. Matilda’s case is very rare, whereas Duchenne Muscular Dystrophy affects on average 1 in 3,500 boys, in girls it affects only 1 in 50,000,000. There is no cure and no treatment for DMD, therefore we hope to make Matilda's life as comfortable as possible and to give her independence as the condition progresses: the two main pieces of equipment which will help her are a mobile hoist (£1074) and Neater Arm Supports (£7000) as well as a travel shower chair (£1140) .

Matilda has been in a powered wheelchair for eight years and requires a hoist for all transfers. She is in constant pain and has had several major surgeries and feels very frustrated as a result. She is now increasingly losing upper limb function and is dependent on others to assist her with all daily activities. One task that is becoming extremely difficult for Matilda is being able to eat and drink independently. Unfortunately, Matilda can no longer lift her upper limbs to bring food or drink to her mouth. Matilda has had spinal surgery to correct a spinal curvature by inserting fixed metal rods. She can no longer bring her head and trunk forwards to meet her hands, and has lost the ability to feed herself independently.

Matilda is also a keen gamer and the ability to use her hands and upper limbs to hold, lift and manipulate objects like a gaming controller is absolutely vital in enabling her to continue to enjoy activities such as this. This is the one activity that she can still do as all other physical activities are impossible now due to limited strength.

To assist her in eating, drinking and interacting independently, she needs Neater Arm Supports . This will give her a much greater range of movement and lift her arms up to and above shoulder height. Using the Arm Supports Matilda will be able to use her arms to do things she ordinarily would not be able to do, like pick up a water bottle to have a drink, feed herself, move her hair out of her eyes, lift a gaming controller. Matilda has tried the arm supports and was excited about the greater range of movement and improved independence that this equipment could give her.

Matilda and our family love to travel, but she is deteriorating physically making it increasingly difficult to provide all the support she needs ourselves. A mobile hoist will allow her to travel with family and friends again without the anxiety and barriers that leaving the house can bring. With this piece of equipment, Matilda will be able to travel anywhere without the panic of being able to access the toilet (she has a ceiling track hoist at home). It will also enable her to stay overnight on trips which is impossible at the moment.

NHS funding is unfortunately not available for any of this equipment, therefore we are reaching out for support and doing personal fundraising challenges such as fun runs, skydiving, walks and hikes and anything people would like to challenge us to do to help fundraise. Any funds raised over the target will be donated to the DMD Society to continue to research transformative treatments and fund support for this rare condition.

So this is our family plan to start in February 2025:

6 Monthly Challenges in no particular order

Challenge 1 - Indoor Water Rowing (350 miles in a month)

Challenge 2 - Indoor Cycling (1000 miles in a month)

Challenge 3 - Skydive

Challenge 4 - Mud-Run

Challenge 5 - 5k/10k (Aintree Racecourse)

Challenge 6 - Walk Snowden

Note: we have decided to do the indoor rowing and cycling to keep the costs down and to avoid potential hazards or delays to routines/challenges.

Please support us and let us know if you would like to join in on any of the challenges or even suggest a new one!

The Baps