Hazel-Capri’s Journey with Nephrotic Syndrome

06/08/2024

1st photo- before
2nd photo- then
3rd photo- now

I know it’s been awhile since I’ve last posted We as parents have been really tied up and busy with our little humans 💕

Before was when all was good and we never knew what Nephrotic Syndrome was (this was our life.)

Then she became puffy and was hospitalised for 1 whole week. (Diagnosed with Nephrotic Syndrome.) high medicated of drugs what they call it is Steroids.

Now this is what she looks like now nearly 9 months diagnosed and thriving through life to the best ability she can be and and I’ll always love her whatever and wherever you will beI love you little girl

18/07/2024

😘😘😘

Adhd awareness 💯
Nephrotic Syndrome Survivor 🙌

09/07/2024

A.D.H.D ❤️
Take my hand and come with me,
I want to teach you about ADHD.
I need you to know, I want to explain,
I have a very different brain.
Sights, sounds, and thoughts collide.
What to do first? I can't decide.
Please understand I'm not to blame,
I just can't process things the same.
Take my hand and walk with me,
Let me show you about ADHD.
I try to behave, I want to be good,
But I sometimes forget to do as I should.
Walk with me and wear my shoes,
You'll see its not the way I'd choose.
I do know what I'm supposed to do,
But my brain is slow getting the message through.
Take my hand and talk with me,
I want to tell you about ADHD.
I rarely think before I talk,
I often run when I should walk.
It's hard to get my school work done,
My thoughts are outside having fun.
I never know just where to start,
I think with my feelings and see with my heart.
Take my hand and stand by me,
I need you to know about ADHD.
It's hard to explain but I want you to know,
I can't help letting my feelings show.
Sometimes I'm angry, jealous, or sad.
I feel overwhelmed, frustrated, and mad.
I can't concentrate and I lose all my stuff.
I try really hard but it's never enough.
Take my hand and learn with me,
We need to know more about ADHD.
I worry a lot about getting things wrong,
Everything I do takes twice as long.
Everyday is exhausting for me...
Looking through the fog of ADHD.
I'm often so misunderstood,
I would change in a heartbeat if I could.
Take my hand and listen to me,
I want to share a secret about ADHD.
I want you to know there is more to me.
I'm not defined by it, you see.
I'm sensitive, kind and lots of fun.
I'm blamed for things I haven't done.
I'm the loyalist friend you'll ever know,
I just need a chance to let it show.
Take my hand and look at me,
Just forget about the ADHD.
I have real feelings just like you.

The love in my heart is just as true.
I may have a brain that can never rest,
But please understand I'm trying my best.
I want you to know, I need you to see,
I'm more than the label, I am still me!!!!
~Author Unknown
Copy, paste and re post this, but only if you want to , to raise awareness of A.D.H.D. When people say it's an excuse, this explains it perfectly! 🙌🏼

08/07/2024

❤️❤️❤️

Embrace your strength and possibilities with each breath. Stand tall, drawing on the resilience and wisdom of your tūpuna. This winter Monday, let your inner fire burn bright, fueled by the knowledge that every moment has the opportunity to invite joy into our lives.

08/07/2024

Arohamai whanau I got held up with my adhd child yesterday but I didn’t forget about you,s but please bare with me as this is a very sentive content to talk about. Overall we just got back from the paediatrician appointment everything is looking good bloods diet iron blood pressure even her vitamin D is great high five to us my girl especially you my Hazel 😊✌️🙌

Me and my girl will be doing a Q&A sometime very soon so look out for that honestly you wouldn’t want to miss as this explains the very little details about her condition. Thought I’d touch base with you lovely people have a great day whanau 💕👀

08/07/2024

06/07/2024

Goodnight whanau I’ll be back tomorrow to post about how this all started and why 👍💕

19/06/2024

Let’s talk Nephrotic Syndrome.

What is nephrotic syndrome
Nephrotic syndrome is a condition that can happen in both adults and children. There are many different causes but they all cause kidneys leak proteins, particularly one called albumin, from the blood into the urine. Protein is lost from the body faster than the body can replace it. Albumin in the blood stream acts like a sponge to keep water in your blood vessels and without it fluid leaks into the body tissues, Fluid accumulates in the tissue and the person starts to look puffy. Even though the kidneys are leaking protein, in other ways they are working normally, and it does not mean that your child’s kidneys are failing.

What causes nephrotic syndrome?
Although there are different processes that affect the kidney leading to nephrotic syndrome, the most common form in children is one called minimal change disease. As the name suggests this form has very little sign of damage in the kidney when a small sample of kidney is looked at.
We don’t know why children get this but it is related in some way to the immune system: some people have suggested it may be more common in children with history of allergy. We know it is slightly more common in boys than girls and in children between the ages of two and ten years but it can happen in all ages. It can’t be passed on from one person to another and it and it may be related to genetic causes that as yet haven’t been identified. Minimal change disease usually responds to medicines and children grow out of it over time. This form of nephrotic syndrome affects about 1 in 50,000 children.

There are other forms of nephrotic syndrome which are rarer in children, but do sometimes happen. Many of these have had genetic cause identified. One of these is called congenital nephrotic syndrome which is form that you are born with. This can run in families. Another form is called FSGS or focal segmental glomerulosclerosis. In this form of nephrotic syndrome the kidney does become sclerosed which is where the name came from. These changes can be seen on kidney biopsy. These forms are more difficult to treat, and in some cases cause long term damage to the kidney leading it to kidney failure.

18/06/2024

Have a good day everyone from us and Hazel-Capri 🫶

18/06/2024

Hey let me introduce myself. Hi my name is Moana Parata I am a full time Mama of 6 five girls 1 boy I have a loving partner,father a step father of 2 who loves our tamariki whole heartedly 💕❤️ I have created this page to share our daughter Hazel-Capri journey with this life threatening illness we call Nephrotic Syndrome and to also to raise awareness around disability’s, syndromes etc.

In December of 2023 Our whole life’s had changed my 6 year old daughter Hazel-Capri was diagnosed with a long term life threatening condition Nephrotic Syndrome this being said this had taken a lot to take in i had a lot of questions to what and why my daughter has this I felt lost,pain hurt for my little girl this is a rare disease here in NZ and all over the world this is caused by leaked kidney this can be caused in various of ways including high sodium which had caused her to get puffy from her head to toes in her case everything she was eating and drinking wasn’t going anywhere but into her skin appointments after appointments doctors after doctors nurses after nurses admission after admission medication after medication and still ongoing matter of fact she is most likely to go into adult hood with it. THIS IS HER STORY to tell so come and follow her journey and interact with pairs just like her my girl is now thriving and striving to the best she can be and we will always be here for her ❤️🫶💯