Click the JustGiving image to either, donate or create your fundraising page linked to Carmela's Cure Fund to help raise vital funds for medical research into Carmela's rare condition to give her and the few hundred children in the world have hope of a treament or a cure. Carmela's JustGiving is a registered charity linked to Muscular Dystrophy UK reg # 205395

What Is Carmela's Condition?

 Carmela has a very rare form of muscular dystrophy called LMNA Congenital Muscular Dystrophy affecting only 1 in every million babies. It is a cruel muscle-wasting condition for which at present there is no cure or treatment.

The condition weakens the skeletal muscles and children ultimately lose the ability to sit, stand and walk unassisted.
The heart is affected too with a risk of sudden death due to the conduction defects associated with this condition.
 
Mutations on the LMNA gene can present as one of four types of LMNA related disorders:
LMNA Congenital Muscular Dystrophy #LCMD LMNA-CMD
Emery-Dreifuss Muscular Dystrophy Type 2 #EDMD2 Emery Dreifuss Muscular Dystrophy
Emery-Dreifuss Muscular Dystrophy Type 3 #EDMD3
Limb Girdle Muscular Dystrophy Type 1b #LGMD1B Limb Girdle Muscular Dystrophy (Beyond Labels & Limitations, Inc.

Over time, muscle weakness causes most infants and children with L-CMD to have trouble eating and breathing. The breathing problems result from restrictive respiratory insufficiency, which occurs when muscles in the chest are weakened and the ribcage becomes increasingly rigid. 

This problem can be life-threatening, and many affected children require support with a machine to help them breathe (mechanical ventilation).
Other features of L-CMD often include spinal rigidity and abnormal curvature of the spine (scoliosis and lordosis); joint deformities (contractures) that restrict movement, particularly in the hips and legs; and an inward-turning foot.


How the condition affects Carmela

Carmela is 9 yrs old from Wiltshire, UK. She is the only child and was conceived through fertility treatment, so is already a miracle baby. She is a very happy, funny little girl with a huge zest for life, and is an adrenalin junky with little fear. However, having this quality affects her greatly because her body doesn't allow her to do a lot of the things without assistance, and so plays a big part with her emotional well-being. 

Since her diagnosis at 3 years old, she has lost the stability in her neck, so it can flop around easily during activites like horse riding and if really tired, the head will droop to one side.  This is causing a deformity in her cervical spine resulting in headaches, dizziness and tightness in the muscles. Carmela has to wear a neck collar when doing physical activities such as her RDA horse riding lessons to reduce further injury. She also wears the neck collar when having 1-2-1 swimming therapy as she can't lift her head up in a supine position so this could be catastrophic in water. 

Carmela has lost a lot of muscle strength in her arms and legs and is unable to lift her arms above her head unless she uses momentum. Carmela now struggles to hold food in one hand to eat and uses both hands to help. She had to give up certain sports at age 7 she once loved due to her progressive weakness causing unstable joints and pain.

Carmela is able to do a quick walk but not run, can jump a few centimetres off the floor, and now struggling to step up or down large steps unless assisted.
She can fall easily if bumped into, especially at school, so wears a safety helmet as her weak neck muscles cause her head to hit the floor first! 

Due to the muscles progressively weakening as she grows, Carmela has to wear a supportive lycra suit under her daily clothes to help provide stability and support of the spine as she grows to help reduce spinal deformities.

Carmela uses a walker for short distances but relies on a power wheelchair to go shopping, at school and walk with family and friends.

 

What she needs

Physical therapy & equipment

There is no cure or treatment to slow down the condition but to help with the discomfort, pain and stiffness that comes with a progressive muscle wasting condition, as well as the mental well being demands, Carmela requires daily mobility and stretching exercises, massages, hydrotherapy swimming, cycling using an adapted trike for low tone children and RDA horse-riding. 

As her condition weakens her, mental health awareness increases, adaptations in the garden and home and specialist equipment will change, costing in the thousands.

This plays a huge financial strain on our one income, so we rely heavily on donations to help Carmela have the best childhood and quality of life with the ever changing needs that comes with a progressive muscle wasting condition. Also to help her fight to stay mobile and independent for as long a possible.

To help fundraise for Carmela's therapy fund, the link is on the blue logo below for you to add your event to or to donate. More information and details of current fundraising for her therapy fund is found towards the bottom of this site. 

or you can donate by: Text CARMELA 10 to 70085 to donate £10.  

Many thanks for your support.
 
Donate Here

Carmela's Published Story Books

Helping To Raise Awareness

9 year-year-old Carmela Chillery-Watson has a rare form of muscular dystrophy called LMNA-CMD. This means that her muscles are progressively wasting away.


But Carmela is brave and determined, and she won’t let her condition prevent her from leading as active a life as she can. During lockdown she was inspired by Joe Wicks’ workouts, and decided to start doing her own exercise videos along with her assistance dog Tinker. She also takes inspiration from the superhero Wonder Woman. Wearing a Wonder Woman outfit in her videos earned her the nickname Wonder Girl as she began raising tens of thousands of pounds for her chosen charity.

But this book is, as already stated, a fantasy in which Tinker uses her own very special magical power to whoosh them both off on magical adventures into space, and to lots of other exciting places.


Written by her mum: Lucy Chillery-Watson. The first book called 'Wonder Girl Carmela & Tinker The Stinker' published 2021 is to help spread awareness of what children dream about doing in real life but struggle due to their physical disability.


The second book called 'Courageous Carmela' published 2023 is to help spread awareness of the challenges faced as a child using a wheelchair in todays society with lack of access to playgrounds and other public places.



All profits go to Carmela's Cure Campaign to help research her life-limiting condition called LMNA-CMD.


Available at all UK book shops or online. You can also ORDER your copy straight from Blue Poppy Publishing - Wonder Girl Carmela & Tinker the Stinker – Pre-order – Blue Poppy Publishing – book publisher in North Devon


Courageous Carmela by Lucy Chillery-Watson, Paul Humphreys | Waterstones

Carmela's Appearance

 At The Bristol Fashion Show

Helping To Show Other Kids They CAN DO

 Carmela has ambitions and dreams and one of those dreams is to be a model who can be seen on a high street shop poster to help spread inclusion fashion to help inspire young children like her.


Carmela never got accepted from her castings for any modelling jobs with the two agencies she was with for a few years, so when The Bristol Fashion Show said they would like to have Carmela model for them, she hasn't looked back.


Carmela first appeared at the show just 5 years old then soon after the Covid Pandemic, she modelled again for them aged 8yrs. Now aged 9, Carmela will be appearing on the catwalk with her assisted dog who will also be modelling an outfit!


Tickets available via The Bristol Fashion Show website

The Bristol Fashion Show – Where ethical designers and artists come together (fashionshowbristol.co.uk)

  

 

 

 

  

Carmela Helps Others

  • Carmela started helping others in year 2020 during the Covid Pandemic, helping those who needed to keep up with their physio exercises like her but couldn't get to their appointments.
  • 2 years later and Carmela has continued teaching online due to a demand from all over the world for those that don't have access to physiotherapy.
  • Find Carmela's helpful exercises on her Facebook page in a photo album at the top of the page 'Carmela's Stand Up to Muscular Dystrophy'
  • Or on her Instagram 'Cure4Carmela'
  • Or even via her YouTube channel 'Wonder Girl Carmela'
Carmela's Facebook Page Carmela's YouTube Page

Meet some of the other LMNA Kids.

 Many of the conditions supported at Muscular Dystrophy UK and Cure CMD are rare, but few are as rare as LMNA-CMD.

The condition is caused by a mutation in a key gene which leads to progressive muscle weakness of the skeletal, respiratory and heart muscles. It’s estimated to affect around 1 in a million children in the world!

But it’s also an incredibly varied condition. Different people could have the same genetic mutation but have very different severity of symptoms. Getting to know that variation is going to be essential to helping us understand and manage the condition, and potentially one day to create personalised treatments.

THE MOST RECENT MEDICAL RESEARCH PROJECT WITH SOME OF THE FUNDS FROM CARMELA'S IS ON THE BELOW SCIENCE LAB IMAGE. 

ALSO - A family in USA have created a charity purely to fund medical research in to L-CMD to help enhance science in potential treatments or a cure, see further information on the current research projects via their L.C.M.D logo below.

Shop Carmela's Rare N Roar Clothing & Accessories

 and help support families with a progressive muscle wasting condition.

Shop links are below the photos to order. A quarter of each item sold goes to MDUK medical research in to LMNA related conditions.

Carmela Needs Your Help!

Carmela's Fundraising Efforts To Help Others Like Her


Carmela aged 9 from Wiltshire has been fundraising for MDUK since her diagnosis 2017.
Indoor sky dive at 3yrs old. Triathlon yearly since she was 4yrs old. School Go Orange. Carbooties. Cakes Sales. Fetes. Bucket Collections. Quizzes. Crafts. Mud Run. Toy Sale. BGC Charity Day and physical challenge events. With the help of friends and family, Carmela has raised just over £86,000 inc gift aid so far on her fundraising page and probably close to £400,000 leading MDUK fundraising campaigns aswell.

My YEARLY London Marathon

Team Orange  Old & New

 TOTAL Raised to date £21.554

YEAR 2020

Daddy, Scott Willis, Hannah Ashford & Charlie

Raised £6310

YEAR 2021

Daddy

Chillery-Watson & Scott Willis


Raised £2494 

YEAR 2022

Mike, Jamie, Liam & Hannah


Raised £9500 

YEAR 2023

Cousins Hollie & Sharon

Raised £3250


My YEARLY Wonder Event 

Total Raised to date £24,815

Sept 2020


Carmela & mum

walked 30 days, 300km in 30 locations West & SE of England



Raised £17,569

Sept 2021


Team Carmela with Team Oxygen, Team Bude & Team Beans raised £2136




August 2022 & July 2023

WONDER WHEELS

Team Carmela 15 cyclists rode 100km across Wiltshire and some 10km

Raised £3500 & £1560


During Covod-19  year 2020, Carmela raised over £50,000 for medical research in to her life-limiting condition and with her toughest challenge September 2020 'Wonder Woman Walk' this alone raised over £17,500.

Carmela even got the real Wonder Woman's attention 'Gal Gadot' who donated thousands and sent her a personal tweet. Also the child star 'Lilly Aspell' who plays Wonder Woman as a child in the movies, sent Carmela a wonderful video message.

'Carmela's Fight To Stay Mobile'
Therapy Fund. Click the logo below to donate.

As well as Carmela fighting for a cure with MDUK she is also 'Fighting To Stay Mobile' as the disease progressively attacks her body. We have joined forces with registered charity 'Just4Children' to help raise money for Carmela's ongoing physical and emotional therapy needs, specialist equipment and any home adaptions which will help her to have a good quality of life and be as independent where possible. You can create a fundraising event attached to her JustGiving page with Just4children or simply donate direct to it.

Danielle Tudor

Bristol Half Marathon
Raised £625 sept 2019 

Dotte, Elaine & Emma

Santa Run
Raised £627 Nov 2019. 

Darren Worrow

Milk Round As SpiderMan
Raised £1500 Aug 2019 

Hollie
Senekal

24hr Dance Marathon
June 2020 Raised £823

Neil 
Foord

Chichester Half Marathon
Raised £335 Oct 2019 

The Whitehorn Family

Devizes To Bath Marathon
May 2021 raised £1150

Where Your Therapy Fund Fundraising Money Has Been Spent

Just4Children Therapy Fund donations have been used for the following so far: Home gym and ongoing equipment for daily physio. New pergola and decking for weekly hydrotherapy in a hot tub and safe level access play. A raised garden bed for her fairies and vegetable planting. Off-road manual wheelchair for ease of aeroplane, train and coach travel with charity 'READY' contributing. A frame runner to allow Carmela to feel the running sensation and work her heart and lungs with the help from charity 'Be More Bailey' contributing. Help towards a 4x4 off road powerchair to aid countryside walks along with Variety Children's Trust, Joseph Patrick Trust and Finlay Foundations contributing. Help towards a football powerchair with Caudwell Trust contributing. Support with training her puppy to be an assisted dog. Plus 2x a year intensive physiotherapy program through Brainwave charity. THANK YOU SO VERY MUCH TO EVERYONE WHO HAS DONATED. CARMELA WOULDN'T BE HAVING THIS FAB QUALITY OF LIFE IF IT WASN'T FOR YOU ALL X

 Celebrities met through fundraising & awards

Beverley
 Knight

Sam 
Allardyce

DJ 
Lee Dagger

Dr.
Ranj

Prince
 Harry/Duke of Sussex

Frank
Bruno


Jimmy
Carr

Al 
Murray

Sarah 
Duchess 
of York

Stephanie Millward 
MBE

 
Bill 
Nighy

Clare
Balding

Ed

Sheeran



AJ

Pritchard



Amanda

Holden



Jordan Jarrett-Bryan



Anne

Marie


Adam Hills




Frank

Lampard




Steph

McGovern




Martin

Clunes



Lauren Steadman




Fleur East &

Lilly Aspell




Tyrone

Mings




Sir

Rod Stewart




David

Beckham




Piers

Morgan




Gary

Linekar




HRH

Prince

William


Saira

Khan




Calton

Cole






.

Gabby

Logan






.

Damian

Lewis






.

Businesses who support or have supported 'Carmela's Stand Up To Muscular Dystrophy' registered charity fund with MDUK.
 Please get in contact if your company would like to support.

Courageous Carmela
Despite the physical challenges and pain and discomfort Carmela tackles daily, she still finds the inner strength to make the most of the situation and doesn't let her disability get in the way of her ability.

Carmela has 2 Campaigns she needs your support with!

Just4Children Charity No 1164473 | And registered as a charity in Scotland No SCO46157 are supporting Carmela with funds for her continued therapy, equipment and adaptations as her disease and needs change.


MDUK is a registered charity. Charity Registration No. 205395 (England and Wales) - SC039445 (Scotland). 
They have set up Carmela a family fund page to help raise money for her specific muscle wasting disease research in to a cure. Because there is only a handful of known cases with LMNA-CMD, not a lot of charity money is invested in to research so MDUK rely heavily on family funds like Carmela's. Click on MDUK image to take you straight to the fund page.

PLEASE CLICK ON A CHARITY FUND LOGO YOU WOULD LIKE TO DONATE TO OR CREATE YOUR OWN FUNDRAISING EVENT ON ONE OF THE FUNDS.
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