Save Celeste

Celeste is suffering from chronic kidney disease and is hospitalised each month. She needs repeat Albumin infusions until she outgrows her condition.

[Save Celeste @CelesteKidneys]

I've been absent from social media because of my daughter’s illness.

We were recently close to losing my two year old daughter due to sepsis. It was a complication of her ongoing kidney disease caused by a secondary infection.

She spent several nights in the ICU and weeks on the pediatric ward after the infection caused her heart rate to leap to 200 beats per minute.

Her breathing became laboured and she drifted in and out of consciousness for several hours and only oxygen, IV antibiotics, albumin and diuretic infusions brought her back from the brink, preventing her organs from failing after her vascular system collapsed.

A catheter was inserted for several days while she slowly regained consciousness.

She was originally diagnosed in September 2025 and we were given a good prognosis at the time provided she was receptive to treatment and regular monitoring.

Unfortunately, since then she has had monthly relapses of her condition and the previous three relapses have caused her to be hospitalised.

Her condition causes her to swell up as her kidneys are unable to function during episodes in what is called Nephrotic Syndrome.

Her episodes are triggered whenever she has a mild cough, sore throat or cold. As you can imagine, with a two year old those illnesses are regular occurrences.

Her long term treatment involves steroids which have essentially erased her immune system compounding her vulnerability to infections.

The only treatment to bring the severe swelling down is IV albumin infusions which she is currently back in hospital on to help with her recovery.

Whilst this condition is chronic and severe, as she gets older and her immune system matures she should begin to react less dramatically to infections and her kidneys should function as normal.

The hurdle is keeping her alive until her immune system is less reactionary. This usually occurs between ages 5-7 in children with this type of frequently relapsing kidney disease.

I fully expect to win this war for my daughter and will do anything to get her across the line so she can live a normal life. I am asking for help to cover the costs of her hospital readmissions each month, a kidney biopsy, albumin infusions, ongoing consultant paediatric nephrologist fees, and further IV treatment that she will continue to need in the coming months and years, which at some point will be needed inside the home so she can avoid infections in hospital.

I have emptied myself of resources getting her this far and was hoping for a better prognosis. However, there is a path for her if we can sustain her until her little body can figure its condition out on its own.

Thank you,

Rob (Dad) and Celeste.

Give Send Go link below in thread.

[Save Celeste @CelesteKidneys]

My daughter is suffering from chronic kidney disease. She's been in hospital for over 5 weeks over the last three months.

She will need to be hospitalised every month for the foreseeable future.

She's permanently swollen because she can't urinate and her body swells up and the only thing keeping her alive are albumin IV infusions.

Only 2-7 in 100,000 have her condition.

The last hospitalisation broke us financially and she's expected to be back in hospital before the end of August.

We discharged her only so that she could enjoy her third birthday at home on the 8th August and see her sisters.

She really needs help.

Please help her.

https://t.co/KeNCJ4S1cK

[Save Celeste @CelesteKidneys]

https://t.co/iYMD9GVE1V

[Save Celeste @CelesteKidneys]

She's down to 17.5kg from 19.7kg.

Her kidneys are working to get rid of the excess fluid with the help of the albumin infusions and diuretics.

They're keeping her alive each month!

I hope she gets a few weeks at home in August (birthday month) 🤞🏻

Scroll down if you can contribute 👇🏻

[Save Celeste @CelesteKidneys]

Race against the clock to get her home for her 3rd birthday 🎈 🎂

Only 7 days to go.

https://t.co/iYMD9GV6cn

[Save Celeste @CelesteKidneys]

https://t.co/iYMD9GV6cn

[Save Celeste @CelesteKidneys]

Update on Celeste’s condition.

First of all, thank you to all of you who have donated towards her ongoing treatment.

It really helped her get through these last few months, and she’s going to make it to her third birthday in the first week of August.

She’s currently in hospital for the fifth time since her first hospitalisation, and we’re hoping that we will have her out in time for her third birthday.

She reached her largest weight since being diagnosed with kidney disease and was over 19 kg at one point (5.5 kg over her natural weight). Her vascularity was so depleted that they struggled to insert the IVs, as they couldn’t find her veins.

Her blood pressure is consistently elevated and they want to put her on ACE inhibitors, aspirin and other drugs which is concerning for me.

A simple cough and sore throat triggered her relapse this time.

She’s now been given steroid-sparing medication to treat her relapses at home, which can prevent complications from long-term steroid use that she has unfortunately suffered from.

We hope they work better than the steroids, as she’s become resistant to them and they no longer trigger her into remission.

We've tried natural remedies and none have worked so far.

The next phase is an invasive kidney biopsy to rule out any more sinister conditions, as her persistent haematuria and high blood pressure are causing concern for the consultant paediatric nephrologist and other doctors.

We’ve spoken at length to other parents with children suffering from this condition, and especially to parents who have a six-year-old who is currently experiencing a nephrotic episode after being diagnosed at four years old.

It’s a stark reminder of the length of this condition, which is why I must be persistent in sourcing help for her in any way I can.

Again, I thank everyone who has contributed to her ongoing care. I have made this social media page for her so that it stays relevant, so give this account a follow.

Her fundraiser is linked in the thread 👇🏻

With more details about her condition.

I would appreciate it if people would continue to share any updates for her over the coming months and years.

Kind regards,

Rob (Dad) and Celeste.

[Save Celeste @CelesteKidneys]

She's drawing pictures of the things that concern her while she's in hospital.

Family, her dogs, stormweather, wanting to go home and who is looking after her are her main concerns.

She's only two but she's very bright.

Also ambidextrous, which I'm not.

I only learned this because of the IVs switching hands every few days.

Special kid.

https://t.co/KeNCJ4S1cK

[Fight Back Podcast @ShieldsClips]

@CelesteKidneys Replying so more people see

[Save Celeste @CelesteKidneys]

She's going back into the hospital.

She's too big to wait unfortunately.

She's had a few days at home.

It's her third birthday in August we want to at least have her at home in the first week of August.

Help her if you can.

https://t.co/iYMD9GV6cn

[Save Celeste @CelesteKidneys]

She's back from hospital but only for five days then she needs to go back to maintain her weight and fluid balance.

She's struggling to remain coherent she's usually a very good talker so we have to inspire her to engage with us.

Very low protein in the blood, extremely high cholesterol and minimised vascularity causes her to feel weak.

Help her keep going here:

https://t.co/KeNCJ4S1cK

[Save Celeste @CelesteKidneys]

She got her Teletubbies just on time.

Still waiting for a place on the ward today.

Hopefully by tonight.

Support her here: https://t.co/5HVulsBFn6

[Save Celeste @CelesteKidneys]

During her stay in hospital she fell in love with the Teletubbies because watching the TV comforted her whilst the needles were going in her arms.

I bought her a teletubby toy and she woke up this morning and fell in love with it.

I ordered the other three colours after seeing her reaction.

Next time she goes in she will have them all.

Support her here: https://t.co/KeNCJ4Sz2i

[Save Celeste @CelesteKidneys]

During her stay in hospital she fell in love with the Teletubbies because watching the TV comforted her whilst the needles were going in her arms.

I bought her a teletubby toy and she woke up this morning and fell in love with it.

I ordered the other three colours after seeing her reaction.

Next time she goes in she will have them all.

Support her here: https://t.co/KeNCJ4Sz2i

[Save Celeste @CelesteKidneys]

I've been absent from social media because of my daughter’s illness.

We were recently close to losing my two year old daughter due to sepsis. It was a complication of her ongoing kidney disease caused by a secondary infection.

She spent several nights in the ICU and weeks on the pediatric ward after the infection caused her heart rate to leap to 200 beats per minute.

Her breathing became laboured and she drifted in and out of consciousness for several hours and only oxygen, IV antibiotics, albumin and diuretic infusions brought her back from the brink, preventing her organs from failing after her vascular system collapsed.

A catheter was inserted for several days while she slowly regained consciousness.

She was originally diagnosed in September 2025 and we were given a good prognosis at the time provided she was receptive to treatment and regular monitoring.

Unfortunately, since then she has had monthly relapses of her condition and the previous three relapses have caused her to be hospitalised.

Her condition causes her to swell up as her kidneys are unable to function during episodes in what is called Nephrotic Syndrome.

Her episodes are triggered whenever she has a mild cough, sore throat or cold. As you can imagine, with a two year old those illnesses are regular occurrences.

Her long term treatment involves steroids which have essentially erased her immune system compounding her vulnerability to infections.

The only treatment to bring the severe swelling down is IV albumin infusions which she is currently back in hospital on to help with her recovery.

Whilst this condition is chronic and severe, as she gets older and her immune system matures she should begin to react less dramatically to infections and her kidneys should function as normal.

The hurdle is keeping her alive until her immune system is less reactionary. This usually occurs between ages 5-7 in children with this type of frequently relapsing kidney disease.

I fully expect to win this war for my daughter and will do anything to get her across the line so she can live a normal life. I am asking for help to cover the costs of her hospital readmissions each month, a kidney biopsy, albumin infusions, ongoing consultant paediatric nephrologist fees, and further IV treatment that she will continue to need in the coming months and years, which at some point will be needed inside the home so she can avoid infections in hospital.

I have emptied myself of resources getting her this far and was hoping for a better prognosis. However, there is a path for her if we can sustain her until her little body can figure its condition out on its own.

Thank you,

Rob (Dad) and Celeste.

Give Send Go link below in thread.

[Save Celeste @CelesteKidneys]

Coming home today after eight days in hospital.

Follow up next Monday hopefully she won't need to be readmitted. Thanks for the continued support everyone she won another round 💪🏻

Support her in the coming weeks and months here: https://t.co/iYMD9GVE1V

[Save Celeste @CelesteKidneys]

Happy Father's Day to all fellow dads.

Spending ours in hospital with my daughter.

We're on day six this time and she's not well enough to leave yet. Still very swollen eyes, tummy and she has developed hematuria.

The best dads have the best kids always look after them no matter how hard it gets.

Have a good one guys!

Help support my daughter's long term illness by following the link 👇🏻

https://t.co/KeNCJ4S1cK

[Save Celeste @CelesteKidneys]

https://t.co/iYMD9GV6cn

[Save Celeste @CelesteKidneys]

We're in hospital at the moment with her but she's responding well to the current IV treatment. We might have her home for a few weeks after (until it happens again of course).

She had to wait a few nights to get on the ward but she's in now for IV infusions to bring her swelling down.

She's at 17.2kg she'll be discharged at 13.5kg after as many infusions as she needs so possibly 7-10 days.

I'll be posting regularly about her.

This is something we will deal with each month until she's older and she's better.

[Save Celeste @CelesteKidneys]

I've been absent from social media because of my daughter’s illness.

We were recently close to losing my two year old daughter due to sepsis. It was a complication of her ongoing kidney disease caused by a secondary infection.

She spent several nights in the ICU and weeks on the pediatric ward after the infection caused her heart rate to leap to 200 beats per minute.

Her breathing became laboured and she drifted in and out of consciousness for several hours and only oxygen, IV antibiotics, albumin and diuretic infusions brought her back from the brink, preventing her organs from failing after her vascular system collapsed.

A catheter was inserted for several days while she slowly regained consciousness.

She was originally diagnosed in September 2025 and we were given a good prognosis at the time provided she was receptive to treatment and regular monitoring.

Unfortunately, since then she has had monthly relapses of her condition and the previous three relapses have caused her to be hospitalised.

Her condition causes her to swell up as her kidneys are unable to function during episodes in what is called Nephrotic Syndrome.

Her episodes are triggered whenever she has a mild cough, sore throat or cold. As you can imagine, with a two year old those illnesses are regular occurrences.

Her long term treatment involves steroids which have essentially erased her immune system compounding her vulnerability to infections.

The only treatment to bring the severe swelling down is IV albumin infusions which she is currently back in hospital on to help with her recovery.

Whilst this condition is chronic and severe, as she gets older and her immune system matures she should begin to react less dramatically to infections and her kidneys should function as normal.

The hurdle is keeping her alive until her immune system is less reactionary. This usually occurs between ages 5-7 in children with this type of frequently relapsing kidney disease.

I fully expect to win this war for my daughter and will do anything to get her across the line so she can live a normal life. I am asking for help to cover the costs of her hospital readmissions each month, a kidney biopsy, albumin infusions, ongoing consultant paediatric nephrologist fees, and further IV treatment that she will continue to need in the coming months and years, which at some point will be needed inside the home so she can avoid infections in hospital.

I have emptied myself of resources getting her this far and was hoping for a better prognosis. However, there is a path for her if we can sustain her until her little body can figure its condition out on its own.

Thank you,

Rob (Dad) and Celeste.

Give Send Go link below in thread.

[Save Celeste @CelesteKidneys]

https://t.co/iYMD9GV6cn

[Save Celeste @CelesteKidneys]

I've been absent from social media because of my daughter’s illness.

We were recently close to losing my two year old daughter due to sepsis. It was a complication of her ongoing kidney disease caused by a secondary infection.

She spent several nights in the ICU and weeks on the pediatric ward after the infection caused her heart rate to leap to 200 beats per minute.

Her breathing became laboured and she drifted in and out of consciousness for several hours and only oxygen, IV antibiotics, albumin and diuretic infusions brought her back from the brink, preventing her organs from failing after her vascular system collapsed.

A catheter was inserted for several days while she slowly regained consciousness.

She was originally diagnosed in September 2025 and we were given a good prognosis at the time provided she was receptive to treatment and regular monitoring.

Unfortunately, since then she has had monthly relapses of her condition and the previous three relapses have caused her to be hospitalised.

Her condition causes her to swell up as her kidneys are unable to function during episodes in what is called Nephrotic Syndrome.

Her episodes are triggered whenever she has a mild cough, sore throat or cold. As you can imagine, with a two year old those illnesses are regular occurrences.

Her long term treatment involves steroids which have essentially erased her immune system compounding her vulnerability to infections.

The only treatment to bring the severe swelling down is IV albumin infusions which she is currently back in hospital on to help with her recovery.

Whilst this condition is chronic and severe, as she gets older and her immune system matures she should begin to react less dramatically to infections and her kidneys should function as normal.

The hurdle is keeping her alive until her immune system is less reactionary. This usually occurs between ages 5-7 in children with this type of frequently relapsing kidney disease.

I fully expect to win this war for my daughter and will do anything to get her across the line so she can live a normal life. I am asking for help to cover the costs of her hospital readmissions each month, a kidney biopsy, albumin infusions, ongoing consultant paediatric nephrologist fees, and further IV treatment that she will continue to need in the coming months and years, which at some point will be needed inside the home so she can avoid infections in hospital.

I have emptied myself of resources getting her this far and was hoping for a better prognosis. However, there is a path for her if we can sustain her until her little body can figure its condition out on its own.

Thank you,

Rob (Dad) and Celeste.

Give Send Go link below in thread.