@Formerlytigger
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Parent of two remarkable children on very different journeys #CKD, #ASD & #ADHD Passionate about CKD mental health support. Son awaiting #kidney #transplant
Rutland
Joined March 2014
- Tweets1.6K
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- Followers452
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Charlie is 13 years old & has kidney failure. To survive, he needs an urgent kidney transplant.
Have you considered living organ donation?
Can you share your spare and offer him the gift of life?
Contact details for the living donor team are:
0115 9691169 ex 79405
🙏 retweet
Melina retweeted
While many people this year will be making space for a Christmas tree, presents, or an extra place setting at the table, some will be making room for their dialysis machine.
This is the reality for 14-year-old Charlie who has nephronophthisis, a genetic kidney condition that causes the tiny filtration tubes in the kidney to malfunction leading to kidney scarring and cysts.
He is currently on the waiting list for a transplant and has been for three years.
What does your Christmas look like at home? Share yours in the comments👇
[Image description: A dialysis machine sits to the left of an image and on top of a chest of white drawers. To the right is a sofa that has been made into a bed with pillows and a blue duvet. Behind in the corner is a Christmas tree decorated in red and white lights. The room is dark but has the glow of the Christmas lights.]
ALT A lounge has a sofa made into a bed with a dialysis machine next to it. It is on top of a chest of drawers. Behind is a Christmas tree lit up with red and blue lights.
Melina retweeted
Charlie was diagnosed with a rare #KidneyDisease - #Nephronophthisis - at the age of 8 and has been waiting for the #gift of a #kidney for nearly 3 years. Charlie's mum Melina updates us about the last 12 months and we share Charlie's story ❤️
facebook.com/share/p/1XY24c7…
Melina retweeted
👨🍳 We had a special visitor to #KidneyKitchen last week! Charlie is just 14 & is currently on the waiting list to receive a new kidney. He's been working with us to create some #KidneyFriendly family favourite recipes
🤝 A huge thanks to him & his mum Melina who came to see us!
ALT Two chefs, one adult and one child, are preparing food together in a kitchen with the Kidney Kitchen logo visible in the corner.
"I stand by advocating for children & young adults. We deserve equal treatment in all areas of healthcare, & that includes our diet, too.
#kidneykitchen enables children & young adults to participate in & enjoy, the, often daunting, diet necessitated by #kidneydisease "
Charlie
Melina retweeted
Josh is a much loved player for @CPDTC2017. After receiving a lifesaving transplant in 2022 he was put on medication for his body to accept the new organ. Unfortunately these drugs can induce cancers😞
Josh is fighting a whole new battle now and we are with him every step 🏴🥊
Man separated from wrongly-convicted mum at birth given 'worst possible' cancer diagnosis
walesonline.co.uk/news/healt…
Melina retweeted
The revolution to slow ckd is amazing however it excludes our youngest kidney patients.
We must do better
**Kids get kidney failure too**
Lights, camera, action 🎬
Filming with @kidneycareuk for #kidneykitchen bringing together age-inclusive #familyfavourite recipes.
Under the watchful supervision of @ChefPaulRipley & @bda_renal
The big conversation. Building a health care service fit for the future.
An opportunity to have your say, your finger prints on the future of the NHS.
Join together to make #kidneydisease heard.
@Kidney_Research
@kidneycareuk
change.nhs.uk/en-GB/
A day of school work in hospital today as we take a giant & exciting step towards #nocturnaldialysis. If all goes well, we will soon be official members of the nocturnal club.
Charlie, as always, looking to optimise & normalise living life on #dialysis due to #kidneydisease
Melina retweeted
The truth of childhood kidney failure is far too much for most to bear
We are united to delay kidney failure & get children time off dialysis
#UKKidneyEcosystem
@lifearc1 @Kidney_Research @Formerlytigger
13-year-old Charlie is no stranger to being a voice for patients living with kidney disease. So, it only feels right to share some of his poetry for #NationalPoetryDay.
Charlie said: "They are about my observations of life on the renal ward. Although 'They stand and watch' could be about anyone on the ward, it is written specifically with a friend in mind. There are a lot of renal poems appearing on social media that are obviously AI, and I am concerned therefore that any genuine poems will lose their impact."
Does poetry help you through your kidney journey? Let us know in the comments.
[Video description: Charlie is standing on the beach looking out to sea with his hands on his hips. He is in a black top, blue and white shorts, and black shoes. The sky is blue, the waves are small, and the beach is empty. The white Kidney Research UK logo is at the top of the screen overlaying the blue sky. ‘They stand and watch (the children’s ward). Poem written by Charlie’ is at the bottom of the screen overlaying the sand. It is in black writing with a white box around each sentence. The next slide is an image of a white wall with the shadow of a window frame. Each line of the poem appears slowly in purple writing, in time with Charlie reading his poem.]
Well said 👏
Please encourage and nurture this attitude 🙏
When submitting proposals please consider session proposals that include adults and CYP to encourage a joined-up focus and facilitate greater participation of paediatric nephrology teams at the meeting! @BAPNnephrology @UKKidney @Kidney_Research
Father who donated kidney to daughter implores others to ignore
religious misinformation about organ donation.
"If anyone saves a life, it is as if he saves the lives of all humankind’ and ultimately donating an organ is doing just that"
mft.nhs.uk/2024/09/25/father…
Heroes walk amongst us 💜
Paediatric Emergency Doctor and mother of three, Tessa believes that donating a kidney to a stranger is the best decision she's ever made.
Visit our website this #OrganDonationWeek to read about Tessa's experiences and why she decided to donate: donateakidney.co.uk/stories/…
I feel that we have thankfully dodged something potentially big this week.
Living on #dialysis, waiting for a #transplant, can seem like living on a knife edge.
There is no bigger message here other than we got through another week & for that, I'm grateful 🙏
#kidneydisease
The incredibly talented @JaneSMatthews who has immortalised Charlie (waiting for a #kidney #transplant) as a mouse pumpkin🐭 🎃 & Harry (waiting for a #liver #transplant) as a mouse spider 🐭🕷
One day, we will join you on the other side ❤️
#nhsorgandonation
#GiftOfLife
This is for all those on the transplant list, awaiting their precious gift of life @NHSOrganDonor @share_wishes. We wait for you on the other side. Please discuss organ donation & share your wishes with loved ones. To #shareyourspares is a truly priceless gift #OrganDonationWeek
Why is #OrganDonation important?
Because being alive doesn't mean Iiving life.
This #organDonationWeek take 2 minutes to register, amend, or withdraw your decision.
organdonation.nhs.uk/registe…
#shareyourwishes with family & #leavethemcertain
Time isn't infinite 💔
BBC News - More families refusing to donate relatives' organs - BBC News
bbc.co.uk/news/articles/c511…
Melina retweeted
The UK’s leading kidney patients support #charity @kidneycareuk has developed their #PIP Helper, an online tool to #support people to apply for Personal Independence Payment benefit, often described as a ‘grueling and daunting process’.
Read more ⬇️
britishgasenergytrust.org.uk…
