Family of Birmingham girl with one in 50 million condition say 'we want to do everything that we can'

Matilda Baptiste from Hall Green, pictured in a floral dress, sat in her wheelchair,. has a one in 50 million condition - Duchenne Muscular Dystrophy - and her family are appealing for vital funds to buy equipment that will help her live more independently
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The family of a girl in Birmingham who has a very rare condition are appealing for help to enable her to be able to do things we all take for granted. Matilda Baptiste has a condition so rare in females there are thought to be just two girls with it in the whole country.

While Duchenne Muscular Dystrophy (DMD) affects one in 3,500 boys, with girls the chances of having it are just one in 50 million. Matilda from Hall Green is 16 and has had the condition from birth.

But it was only when she started to walk her parents noticed something was not right. But because her condition was so rare in girls, it took until Matilda was four before she was diagnosed.

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Her mum, Jo Baptiste, said: “She was late at walking. She used to be cautious when anyone came near her.

“We knew she had a strange gait. We went to professionals. And when she walked up stairs one doctor knew straight away it was Duchenne Muscular Dystrophy.”

Matilda has undergone a series of major surgeries as a result of her condition. And because DMD is life-limiting, the 16-year-old’s condition has started to deteriorate and she now needs vital equipment to do things everyone else takes for granted.

Matilda’s mum Jo has launched a GoFundMe page to try and raise money to pay for the vital kit, to give her daughter some independence and quality of life and it’s already received more than 130 kind donations as it passes £5,000 - half the target set.

Matilda, pictured with her family, needs £10,000 worth of vital equipment to help her do basic things like eating and drinking or going out for day trips and holidays
Matilda, pictured with her family, needs £10,000 worth of vital equipment to help her do basic things like eating and drinking or going out for day trips and holidays

Jo, a teacher in Kings Heath, said: “Matilda is a manifesting carrier of Duchenne Muscular Dystrophy, which is a life-limiting condition involving muscle deterioration. Matilda’s case is very rare, whereas DMD affects on average 1 in 3,500 boys, in girls it affects only 1 in 50,000,000.

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“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:

“Everything we take for granted she can’t do, like raise her hands at all. She can’t brush her hair. She can’t brush her teeth.

“DMD is normally hereditary. But with Matilda, there is no family history. It’s one of those freak things that can happen.

“She has two healthy and well siblings. A seven-year-old sister and 14-year-old brother. They are both her little young carers.

“Matilda says ‘Why me’. It’s almost harder because there is no reason. We try and be positive for her and try and do everything that we can do.”

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'You do one thing and it’s 10 steps back'

The teenager has already had to undergo major procedures, but is still in ‘constant pain’. Jo said: “She had her tonsils out. She broke both her femurs because she fell and went down like a ton of bricks.

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“She has also had tendon release surgery which keeps her feet flat – called a foot drop. She has been in a wheelchair since she was seven.

“She had spinal surgery two years ago and has got rods in her back to keep her up straight. You do one thing and it’s 10 steps back.

“We want to get her equipment to make her life as comfortable as possible and give her independence as the condition progresses.”

Matilda has a sit-to-stand chair, which cost over £20,000 and Jo managed to get a grant for. She said: “Without it I don’t know what we would do.”

Matilda pictured with younger sister and elder brother who have become 'young carers' for her
Matilda pictured with younger sister and elder brother who have become 'young carers' for her

'She won’t eat if I feed her - She thinks ‘what’s the point’

To help Matilda live a more independent life, she needs Neater Arm Supports to enable her to eat, drink and continue to play on her Xbox console, which she loves. The supports cost £7,000.

She also needs a mobile hoist to allow her family to go out and about and travel, so she can use any toilet, and not rely on places which only have a Changing Places toilet with a hoist. That’s £1,074.

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And she’d also like a travel shower chair which costs £1,140. “The NHS does not fund any of this equipment,” her mum said, despite some of it enabling Matilda to do the very basics. She said: “It should be funded on the NHS. The alternative is for me to feed her and she won’t eat if I feed her. She thinks ‘what’s the point’.”

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'For Matilda the equipment will be life-changing - for now'

Around £10,000 needed to change Matilda’s life and give her some independence and confidence back. Mum Jo said: “The Neater Arm Supports, she has a sensor she controls them with and she can reach for things. It’s life-changing for now.

“In terms of her quality of life it’s all about that and trying to feel as normally as she possibly can. Every bottle I have to find for her has to have a straw that’s long enough. For her, it’s really frustrating. She relying on everybody for every part.

“In terms of if we go out for the day, we need a toilet with a hoist. Where we go has to be within an hour of home, in case we need to go back quickly. As a family, that limits everything we can do.

“It also impacts her seeing her family. Me and my husband are from Liverpool. But we have lived here since 1998. But we can’t stay with her there.

“Matilda loves to travel, that’s her passion. At the moment we are limited to hiring sparsely available specialist equipment, that meets her needs, which inevitably is only short term due to the nature of the increased demand.”

Jo added: “I was told to do a GoFundMe. It’s only now we have been able to do that. Before we wanted to keep it private and manage.”

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'Matilda has a major character - she's really chatty'

Matilda goes to Wilson Stuart School in Erdington, although did go to mainstream Kings Heath Primary before her condition got worse. Her mum said: “Matilda has a major character. She is really chatty. She’s got an expressive face. She questions everybody about everything. That’s what school say about her. They love having her around.

“But she’s a teenager and has her moments. And we ground her and remove her games controller. She’s on a ton of medication. She’s trying her best but frustration creeps in.”

Jo said Matilda’s favourite pastime is playing on her console. She said: “Gaming is also what she loves and what she’s good at. That’s where she can have that social side.

“Matilda has an Xbox and plays Fortnite. That’s her favourite game. She’s able to talk and interact with people, where she can’t do things like go to McDonald’s with friends. And that helps her social side. That impacts on her mental health then.

“This is the one activity that she can still do as all other physical activities are impossible now due to limited strength. And we want to make sure she can continue to do so.”

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As well as the GoFundMe page, which you can contribute to here, Jo and her family are doing their own fundraising challenges, like the Baps Cycling Challenge, dad John, also a teacher, in Solihull, is undertaking to ride 70 miles a day for six months (virtually) the equivalent of Birmingham to Sydney, Australia.

Her aunt in Sydney is planning a city to surf marathon with family and friends. Rowing, sky-dive, mud-runs and walks are also planned.

Jo added: “I think it’s getting incredibly difficult. It’s a lot to take on. The family dynamic changes when you have got a disabled child. That impacts on us and our other children. They become young carers. I suppose for us we try and keep going. You have to take each day.”