maci-louise's story

For the first 10 weeks of Maci-Louise’s life she would scream constantly, vomit, wouldn’t take any type of feed and didn’t have any bowel movements.. Following an emergency referral to hospital she spent six months there for tests to try and find out what was wrong. In 2016 she was diagnosed with Chronic Intestinal Pseudo Obstruction Syndrome – Neuropathic Type. She also has epilepsy and a cyst on her brain. 

Eating food could cause Maci real harm, so she has to have her nutritional needs met by an infusion which goes directly into the bloodstream, known as Parenteral Nutrition.  The family have been coming to Little Havens since 2015. 

Maci, as her family calls her, has a large family. As well as her mum, Sophie, and dad, Stephen, she has a little sister Evie-Rose, six months and four adopted older siblings; Shannon, 21; Courtney, 18; Bradley, 16 and Demi, eight.

Maci’s illness affects every aspect of family life, as Stephen explains, “You take eating for granted. You don’t realise how much food is everywhere. You take her to a fairground and it’s everywhere, she asks for sweets or something and you tell her she can’t have it, so she screams and then you get people staring at you thinking, just give her one. But it could kill her.”

Sophie adds,
“Everywhere you go there’s food, if we take her to soft play there’s food there. She started dancing and we had to stop it that same week because they have snack time and she couldn’t work out why she wasn’t allowed anything.”

“Up until we got the diagnosis there wasn’t such a thing as dinnertime in our house. We’d all talk in code. Soph and I wouldn’t eat until later, the older kids started to do their own food because it was easier for them than having Maci screaming at the stair gate,” explains Stephen. “And there’s never a set routine because Maci got wind of this. It was really hard. We had to learn a new way of life because she can’t have sweets when we’re out, can’t have an ice lolly because then Maci will want one.”

The family were close to breaking point when Stephen referred themselves to Little Havens.

Maci in the messy play area at Little Havens

Sophie says, “We never got a proper break from Maci. Although we had carers come to the home, we’d spend time catching up with the things we couldn’t get done, like the housework and washing. So we never really rested. But when we come to Little Havens you get that break and the chance to sit down and relax or if we want to go out for lunch, we can.”

For the first year the family came for day stays to the hospice, but now they come and stay as a family overnight.

“For her to be in a safe, friendly environment, even if she is screaming when we leave her, I know she’ll be alright in five minutes. She’ll be fine again and playing and to know that I don’t have to worry when I’m not here. And it’s not just about coming to stay here, if you include the sibling clubs, the extra fun days they do that we get invited to, it’s so much more than just respite.”

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