Madi's fight for normal
Relieving the financial stress off Madi's Mum as she will be taking time off work to be with MadiSouthland
Madi was diagnosed with SJIA (Systemic Juvenile Idiopathic Arthritis) in December 2020 after a lot of admissions to hospital from the age 5 months old. Madi turned 2 years old on the 26th April. Only 3% of Juveniles diagnosed with Juvenile Arthritis have this form of the disease. Some days she can not even stand having clothes on as her skin is sore. 8 weeks ago Madi started a low dose chemo drug to try and stop the disease from attacking her, this was added to other medications including a high does of steroids. This has not been as successful as they had hoped and on Tuesday the 27th April (day after her 2nd birthday) Madi will be admitted to hospital for preparation to start another low dose chemo drug which needs to be given by IV. She will have a PIC line inserted as they are anticipating her being on this one for 6 months or more and the PIC line will make it easier for administering the new medication.
Trudy Harwick's involvement (page creator)
I am Madi's nana.
Use of funds
Any funds raised will be used to buy anything for Madi that will help her with this horrible, life long disease. i.e new mattress. And also to help with any expenses and bills that Makayla is finding hard to cover due to having to take time off work.
So Many Ups and Downs 28 July 2021
It has been a while since I updated but there has been so much happening. Madi is on 2 types of low dose Chemo. We give her a injection every Monday and then every second Wednesday she has a transfusion at the Children's Ward.
Madi was being weaned of her steroids but was not going well. She has decided to slow down on making the natural adrenaline therefor the steroids had to be increased. Not to the original dose but still enough to bring make the dreaded Roid Rage. She is currently on 9 different meds that we give to her through out the day and boy is it exhausting coming up with different a new ways of giving them to her. She is generally pretty good taking her meds but there are a couple she absolutely despises so we have to hide them in something else.
Through the money received from your amazing generosity we have bought her a new car seat, her very own Samsung Tablet, a whole heap of thermal clothes, a new bed, mattress, bedding, and whole heap of stuff to keep her busy and amused out here on the farm. She absolutely loves it all and sometimes we will walk into her room and she will be serving her teddy and Emma doll Tea and Cake at her cafe, or reading a book or just doing puzzles.
We have done all we can to keep her protected from all the horrible bugs going around but sadly she has contracted the RSV bug. She is on what we call maintenance antibiotics which she has Monday, Wednesday and Friday and thankfully that has been helping keeping it from getting very serious. She does have a mild case and we are endeavoring to do everything we can to keep her safe, warm and protected. Makayla has stepped back from work at this time for Madi safety. If Madi was to get the full force of the virus she will be sent straight to Starship.
Madi is so active on some days and I love just watching her running and dancing and generally just being a kid. But at tea time we give her some Ibuprofen and Paracetamol as we know once she quietens down she is going to start feeling the pain. She loves being a Ballerina and we will put some YouTube videos on for her which has a lady taking wee girls her age for class lessons. Madi loves dancing with them. Her new obsession is Fire Engines and she will run around the house with this red tomato slice (a wooden toy) up to her ear yelling "Quick it a emergency, there a fire" so the other day we bit the bullet and bought her a Paw Patrol ride on fire Engine and she is obsessed.
Honestly I wish everyone could spend just one hour with this little warrior. She certainly puts things in perspective. She is so brave, resilient, loving, bright and funny. She is the BEST.
You can follow Madi's journey more closely on the Instagram made for her by Makayla. @madsfightfornormal
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This page was created on 25 Apr 2021 and closes on 25 Oct 2021.