What it’s like when your 2-year-old has Diplegia Cerebral Palsy

"It's so difficult... Millie's such a bright child, it's just her body that lets her down a bit"

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Being a mum is a lot of work in itself – but here at MFM HQ, we’re always moved by stories from parents who have, we think it’s fair to say, a little bit of a harder job than we do.

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We were particularly struck by mum Jessica Simmons’ story. She’s juggling the daily ups and downs of life with 4 kids – one of whom, 2.5 year old Millie, was diagnosed with Cerebral Palsy (CP) Spastic Diplegia at 15 months.

Diplegia CP causes muscles spasms, tension, stiffness and reduced motion in the legs.

Describing a typical day in her life, Jessica told MadeForMums: “I don’t get emotional about Millie’s condition anymore – you just have to get on with it, get things done.”

Here’s her story in her own words…

“My daughter Millie was diagnosed with Cerebral Palsy Spastic Diplegia in November 2016. Our world came crashing down around us when we found out.

“Millie was born at 29 weeks, but now she’s now 2 and a half, and she’s just learnt to crawl, which is amazing because we didn’t think this time would come.

“She’s really slow at everything, and she can’t walk yet. She gets really frustrated because she can’t walk like her little sister, who’s just started.

“Her legs are just really stiff, and if she’s got a cold, they become even more stiff. But if she’s well, sometimes they’re really nice and loose – she sits lovely, she crawls lovely.

“It’s really hit and miss. It’s just so difficult. But she smiles through everything, she does.”

Getting Millie dressed in the mornings

millie siblings

“I have 3 other children, so I’m up at 5.30am – or 6.30am, depending on how tired I am.

“I’ll get the youngest 2 – Darcie and Millie – dressed. Darcie’s really easy, but Millie’s really difficult. Because of how her body is, she goes really stiff and rigid.

“Even putting her coat on is hard work. She has to lay down, and we have to try and position her so that she’s comfortable.

“Then my other 2 wake up. Breakfast – well, Millie feeds herself now, and it goes everywhere. Then we’ll do the school run…”

My 90-minute school run with Millie

“It takes me a good hour and a half most days to get everyone ready to leave to get into the car. It’s hectic, but we get there.

“Only recently, we got another car seat for Millie. She was in an infant carrier, and now she’s in a proper car seat, which swivels, so we can twist it, and the seat turns.

“It was so difficult putting her in the car sideways on because of the way her body is, so having the seat spin means we can pop her in and take her out.

“Unsurprisingly, it’s a pretty big contraption. My car is so full – someone needs to make one big enough!

“I tend to always have a little person with me in the day, but Millie goes to nursery 3 full days a week. It’s one of those things: they just grow up too quickly.

“I’ve got my little Darcie with me for now, and when she goes off to school, I’m gonna be so lost.

“I do the pick-up for the eldest 2 at around 3.30pm, and then they go and play while I’m sorting out the dinner. Then, it’s homework time. The younger 2 play and just destroy everything…”

“When she sleeps, it’s lovely, because she’s so relaxed”

millie hydrotherapy

“After bathtime, bedtime is around 7.30pm.

“Millie loves the water – she does hydroptherapy sessions – so she enjoys being in the bath. We’ll bath her with Darcie, who loves to splash around.

“Millie tries to splash her back, but can’t, because she doesn’t have the movement as freely as Darcie does.

“She has a special bath seat, which she doesn’t like, because she has to be strapped into it.

“Once, I tried a round seat for older children – they do them in Boots, and Mamas and Papas – and I got her stuck as she went so stiff, so I got a special seat. Otherwise, she’d have to come in the bath with us.

“When Millie sleeps, it’s lovely, because she’s so relaxed. Her body is so chilled. When she’s asleep, there are some positions she moves herself into where I’m like, ‘Why can’t you do that when you’re awake?’

“But now she’s older, I think she’s getting pain in her hamstrings where the muscles are tightening – so we do give her a leg rub before bed, to loosen her up a bit.”

Could surgery help Millie’s condition?

“I saw a little girl on This Morning who’d had SDR (Selective Dorsal Rhizotomy) neurosurgery, which reduces or removes spacisity in the legs.

“I had tears in my eyes watching it with my friend, like, ‘Oh no, it’ll start me off’. I don’t usually get emotional about Millie’s condition anymore – you just have to get on with it, get things done.

“SDR’s a pretty mainstream surgery in the US, but here in the UK, the NHS don’t do the surgery often, and there’s only so many candidates that go through each year.

“So, we have to go through a load of clinics, to then have a ‘yes’ or ‘no’, and after waiting all that time you don’t know how long it’s gonna be before the op.

“It could be several years – but it’s more beneficial for her to have it done while she’s still little.”

“She’s so bright, but her body lets her down a bit”

millie chair

Ah, it’s just really frustrating because I know how much surgery could help her.

“It’s not that I want Millie to be normal like everyone else, it’s just giving her that chance to be able to do stuff that her sisters are doing.

“I wouldn’t change her for the world at all, but if there’s hope out there, you’re gonna go for it. If there’s a chance it could work.

“Millie’s a really bright child, she’s so bright, it’s just her body that lets her down that little bit.”

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Jessica is fundraising to send Millie to St Louis in America to have the surgery – if she’s unable to get it through the NHS. If you’d like to donate, you can do so on the family’s JustGiving page

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