Maddie was diagnosed with Nephrotic Syndrome in December 2008 when she was a week off turning five. The family had just moved rural and so thought she was allergic to grass as her eyes were all puffy. The family doctor sent Maddie to hospital where after a blood test it confirmed it was NS.
A disease that 95% of children grow out of by the time they are teens – Maddie never responded to any of the treatments including high dose steroids, chemo, and immune suppressing meds, finally after multiple kidney biopsy’s Maddie was diagnosed with Idiopathic FSGS but not until after multiple trips to Starship Children’s Hospital on life flights and weeks on life support. Maddie’s blood was sent to the USA for testing to see if it was genetic but it wasn’t.
Maddie became too unwell to attend school, and lived frequently for days and some times weeks on end in hospital. After Maddies second time on life support (Dec 2009) it was decided that all treatment would stop as her kidneys were beyond repair.
This was followed with her going into end stage renal failure quickly, the removal of one of her kidneys and the start of dialysis. There is a criteria to meet for a transplant which said Maddie needed to have a protein level of 27 hers was 5000 thus the removal of her first kidney then her second one to meet this criteria.
During this period Maddie experienced many blood tests, scans, new drugs to trial and was also on a special formula overnight via a mickey button ( feeding tube) directly into her stomach, she was exhausted and feeling nauseous, wasn’t allowed to swim or sit in baths. Much of her childhood was taken away from her as she couldn’t experience the things that girls her age were able to do.
In December 2011 it was decided that she needed a transplant now as she wasn’t doing as well on dialysis as she used to do. Both parents Adam and Sarah were tested to see who was going to be the best match to give her a kidney, they both matched with blood type so Adam went first to see if he met all the other criteria for giving her a kidney.
As this process can take up to three months and they only test one person at a time they decided to pay for all of Sarah’s testing so if for any reason Adam failed with his testing then it was all ready to go with Sarah. At this stage Maddie was getting sicker, and it really was a horrendous way to live as a family – but life hadn’t finished dealing another blow, during Sarah’s testing she was required to have a mammogram which picked up invasive breast cancer – no symptoms and no lumps could be felt – this halted the program for Maddie to be transplanted in January 2012 as Sarah needed to have a mastectomy and six months of chemotherapy before the transplant for Maddie could go ahead with Adams kidney.
Two weeks after Sarah finished chemo the family flew to Starship Hospital to start the process of preparing Maddie for her upcoming transplant. It was a tough time as Sarah hadn’t really had a chance to recuperate from the last dose of chemo before it was all about getting Maddie ready. Maddie had to have plasma pheresis for the week prior to transplant which is like a blood cleansing treatment.
Maddie was transplanted in October 2012 – her transplant went well and her new kidney from Adam started to make urine quickly, unfortunately over the following years Maddie had many frequent trips to Starship for treatment from multiple urine infections which damaged the kidney. Her body has built up antibodies to the transplanted kidney sadly causing it to fail.
Sarah had breast reconstruction in 2014 which proved to be another challenge for the family as she developed bi lateral pulmonary embolisms ie two blood clots in her lungs. It was a long road to recovery which required several more visits to theatre to remove the areas that had died and to remove the areas that were infected.
Sarah now has some damage to her lungs from the clots and has not yet made the five year mark for being considered cancer free. She is now considered a high risk patient – thus can’t give Maddie one of her kidneys.
Maddie didn’t start school until she was nine as she was to unwell. Maddie was way behind her peers academically but very forward in life skills such as speaking and mixing with adults as this was really all she had known for the last four years.
Maddie attends St Margaret’s College due to the support of the John Velvin Trust. Maddie is now Year 8 – but over this last year has missed so much school but when she attends school she puts everything into her day to catch up as she wants to be a veterinarian and knows she needs science and maths for this.
Maddie again started dialysis in June this year 2016. This is no life for a child, hooked up 10 hours a night on dialysis and an afternoon session as well. Formula feeds via her mickey button every night, plus she takes 28 pills a day, has leaking mickey buttons, sore dialysis lines, feeling nauseous. She is on daily fluid restricted and is only allowed to drink 300mls a day – no winter soups as this is classed as fluid and would use all her fluid allowance up for the day.
On dialysis it means Maddie can’t have sleep overs or stay for dinner at her friends as she has to be hooked up to the dialysis machine every day and night.
Sarah says, “it has a really huge impact on the family as they can’t go away. They used to love camping trips together but they always have to have a reliable power source. We can’t go out for meals we have to be back in time to hook up Maddie. Our family life is totally centred around what treatments Maddie has to have and how well she is. It is constant never a day with a let up and the day can be changed in seconds. One minute she might be alright the next we are off to hospital.”
Sarah said, “they are interrupted several times throughout the night with the diaylsis alarms going off…sometimes it could be 12 times or more and then she ends up staying out of bed and sitting beside Maddie’s bed.
There are no trained Paediatric staff in Christchurch for children on dialysis so it is always Adam and Sarah who are totally responsible for Maddie. Sarah said, “It is very stressful to have the responsibility of your chronically sick child’s wellbeing resting in your hands and the dialysis machines contiually break down and with no back up machines in Christchurch we have to cope manually while another one arrives from Auckland.”
Most parents have dreams for their children in the future and Sarah says:
“her first thoughts when asked what her dreams are for Maddie is always I want to see her grow old but I also want to see her be able to achieve her dreams and to be able to do the things that she wants to do. Maddie has dreams and she wants to be a veterinarian. She has a special way with animals and they always respond to her, they are great therapy for her when she is not well.”
Maddie is a very tough and courageous little girl and will go horse riding when she has just come out of hospital, knowing that once she has finished a lesson she will be so exhausted and won’t be able to get off the couch. She also pushes herself at school not only academically but socially.
Maddie is amazed at all the things people are doing to help her so she decided she should be doing something to help also with her fundraising. For her William Pike challenge Maddie learned to sew pillowslips so she decided that’s what she could do. Not only does she sew pillowslips to sell she also gives some away to other sick children in hospital.
With the constant pain and suffering, feeling ill and the never ending medical procedures that Maddie goes through she still lives life to the full…She is up in an instant when she can be and gives it all she’s got!!
Maddie has three wishes:
A Family Holiday
This very special little girl needs all the help she can get. Maddie only has a 2% chance of matching anyone in New Zealand for a kidney transplant so the most likely and best option for her is to have the transplant in America.
The estimated cost that has been received for this is $750,000.00. There is urgency around her having the transplant as soon as possible as her health is deteriorating and the quality of life she is living with having to be hooked up to the dialysis machine every day is not the way a child should have to live.
The outlook for Maddie from having another transplant is very good with her specialists saying the success rate from a second transplant are very high and they have the evidence of many people going on to live full lives.
Just a little from lots of people can make a huge difference…..
Your help will make a big difference to a little girl’s life when you support this campaign to “Get Maddie A Kidney”
We can all help give Maddie her life by donating a little or a lot– it’s that “SIMPLE’
“Give The Gift Of Life