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Meningitis Research

Remembering Alexis Rose

Fundraising for Meningitis Research Foundation
£3,676
raised
by 11 supporters
Donations cannot currently be made to this page
In memory of Alexis Rose Dlugolecka
Meningitis Research Foundation

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RCN England 1091105,SC037586, Ireland CHY 12030
We fund research and raise awareness to create a world free from meningitis

Story

 

Thoughts I had about Alexis today

 

Christina ate marmalade for the first time today, she picked it off my toast when Billy and I were sitting at breakfast. This reminded us how crazy the girls went for slices of orange, especially Alexis! They used to suck the living daylights out of it 'til it disintegrated while eating the rest of the orange with their eyes. Alexis was always very good with her food, we used to call her Tubs because she was bigger than Christina and her other nickname was Pudding, while Christina was Pie, or The Bean (because she was so small). My son chose Alexis Rose as her real name; he was very close to both the girls.

In the week before Alexis died, when she and Christina were ill with the sickness/diarrohea virus, she didn't eat or drink very much at all, we think her teeth were hurting too. We had to syringe water into her mouth to get her to drink on the advice of the doctor we saw. She lost all her energy and mainly wanted to snuggle into me or Alan, which really wasn't like her. I was off work and wearing a red dressing gown most of the time to keep warm, which was really soft like the girls' favourite blanket, Snuggleblanks, and I can still feel her wee body cuddling in to it. It was only in the middle of the week when Alan and I were eating dinner in the living room, that she turned from her position on my knee and silently pointed at the food. Every time we gave her a mouthful she would eat it carefully and then point back for more very seriously. Alan and I couldn't stop laughing because it was amazing to see her focus and we were so relieved she was on the mend.

By the end of the week I was back at work- though the girls still had diarrohea, they were on their feet and back to their normal selves and eating and drinking and sleeping well. We had called the doctor midweek to ask if we should still be worried about the continuing diarrohea, but were told no, if they were having wet nappies and eating/drinking. It was only on Friday when I came home from work that Alexis seemed tired out (she had been playing all day with some other twins and her sister) and running a little temperature. However, she was still keen to eat and after some pasta I gave her a shower and put her in a sleepsuit. Her temperature was down by then and there was no sign of a rash. She went to sleep after the second attempt with a bottle and we thought no more about it, we were glad she was resting. Christina had developed a bad cough and we spent longer trying to get her chest to calm down before we laid her down too. When I passed Alexis, I pushed her bottle to the side and touched her face by accident. She stirred in her sleep, but didn't seem troubled or fevered at all. This was the last time I would see her alive.

This is the terrible thing about meningitis- it kills so quickly and often there is little warning. It very often appears after a child has had a cold or virus, so it can be confusing when your child seems to have been getting better. The best advice I could give anyone is to look at the symptoms and if you have any gut feeling at all when your child is ill and showing any of the symptoms, act on it immediately and seek medical help as soon as you can. Even for doctors meningitis can be hard to catch in time. When I spoke to my doctor after Alexis had died he explained to me that they have a saying in medical school that today's virus could be tomorrow's meningitis, because some of the symptoms like a running nose and raised temperature could so easily be those of a cold/flu. It is only as the symptoms develop that meningitis may become more apparent.

For those of us who have lost somebody to meningitis, I think the shock of losing them so suddenly is difficult to shift. That’s why I think it is important that we share our experiences and support each other while we go on living, because those who die wish us very much to live.

 

About the charity

Meningitis Research Foundation

Verified by JustGiving

RCN England 1091105,SC037586, Ireland CHY 12030
Meningitis is deadly; killing and seriously disabling in hours. Small children and young adults are high risk, but all ages can be affected. Globally 1,000 people die daily. We fundraise to invest in research, campaign for vaccines, provide symptom information and support those already affected.

Donation summary

Total raised
£3,675.75
+ £180.75 Gift Aid
Online donations
£1,259.00
Offline donations
£2,416.75

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