Nicole’s son was extraordinary gift now she’s in battle to see him grow

Nicole Harvey and Rian Pearson have one thing in common – without a lifesaving gift from a stranger, they will die. But with just a moment, you can help fellow Queenslanders just like them.

JUST over three years ago Nicole Harvey received a gift that changed her life.

Her precious little boy James was born via a surrogate.

Now Nicole needs another extraordinary gift, this time one that will give her life.

The Sandgate woman’s heart is fading and a transplant is the only way she will get to see her son grow up.

The average waiting time for a heart is more than six months depending on size and blood type match.

Meanwhile a tiny piece of equipment, which James calls “mummy’s robot” is keeping her alive.

All hope lies on this ventricular assist device to boost Nicole’s heart function until an organ becomes available.

Nicole Harvey, 39, her son James, 3. Picture: Liam Kidston

Nicole is 39 and was diagnosed with cardiomyopathy a decade ago.

The cause is unknown but doctors think it was linked to a virus.

Medication therapy has given her a good life since that diagnosis.

“I’ve travelled, got married and started a family but three or so years ago my heart started to deteriorate and this year my doctors put my name on the heart transplant list and that is where I am now. My son is three and my husband and myself went through so much to have him. I have to see him grow up,” the tearful mum said.

“Going through surrogacy was stressful. There was a lot of anxiety that didn’t help my health. My heart condition meant I couldn’t carry the baby myself but a good friend supported us and agreed to be a surrogate. She is part of the family and I will be forever grateful,” Nicole said.

Nicole Harvey, 39, at home with her husband Cameron, 45, and son James, 3. Picture: Liam Kidston

James is aware his mum is fragile and knows “mummy’s robot” is very important and he must not touch.

“I get tired easily and I am hoping that one day a new heart will allow me to run and play with James without being out of breath,” she said.

Dr Scott McKenzie, A/Director Advanced Heart Failure and Cardiac Transplant Unit at The Prince Charles Hospital is Nicole’s doctor.

Dr Scott McKenzie.

“Nicole’s heart condition was bad luck but there are cases where people do not look after their heart health and that makes me frustrated when I see patients who are in desperate need of a heart transplant,” he said.

“It is so important that anyone considering organ donation tells their family of their wishes as sometimes when a patient is brain dead and the family is consulted they are unsure of what to do and may block the decision. These organs are so precious,” Dr McKenzie said.

“I am very hopeful that Nicole’s ventricular assist device will do its job and keep Nicole alive until a heart becomes available. The heart must be the right match for her size and her blood group,” Dr McKenzie said.

The ultimate gift of a stranger’s heart would make 2021 the perfect year for the Harvey family.

“My husband Cameron has been with me every step of the way. A heart would make the world of difference to my whole family and to the amazing doctors who have looked after me at The Prince Charles Hospital,” Nicole said.

STRANGERS KEEPING RIAN ALIVE

He’s only six but Rian Pearson has been on the brink of death multiple times.

Doctors say he will need a kidney transplant during his childhood but protocol does not allow him to go on the wait list in advance, despite a two-year delay for lifesaving kidneys.

Queensland Health said organ transplant is a last resort decision and clinicians follow national clinical guidelines when assessing transplantation requirements.

“Sadly, Rian will have to be at death’s door before we can put him on the list,” mum Isabella said.

“He will not be considered eligible while he is stable. I understand there needs to be rules … but I would sleep better at night knowing that he was at least in the running from now. If he goes into renal failure again he will need an urgent transplant but even if he is lucky and remains stable doctors say he will definitely need new kidneys after puberty.”

Isabella Pearson with six-year-old son Rian at their home in Logan Village. Picture: Richard Walker

The Logan boy has been in renal failure on three occasions and thanks to Sydney doctors he was stabilised with two cytotoxic medications treatments that brought him back from the edge of death.

Rian was diagnosed with focal segmental glomerulosclerosis (FSGS) nephrotic syndrome when he was two. His little body is like a pin cushion from endless albumin infusions.

“We live every year the way Queenslanders have lived through COVID-19 in 2020. We have to keep Rian away from anyone who is sick.

“He has many, many days off school as he can’t go if he is sick or any of his classmates feel unwell,” Isabella said.

The family’s life revolves around the renal unit at Queensland Children’s Hospital.

“It’s like a second home there and the staff are like family, making our ordeal more bearable,” she said.

Rian Pearson, 6, with brother Lincoln, 2. Picture: Richard Walker

A spokeswoman for Kidney Health Australia said 134 people in Queensland were on the waiting list at the end of 2018, and the average time on the list is 2.1 years.

Live kidney donations made up 21 per cent of all transplants in 2018 – however, for the 0-4 age group around 60 per cent of all transplants are from live donors, and for the 5-14 year age group it’s just under 50 per cent.

No one in Rian’s family is a suitable donor, and the family is forever grateful to the blood donors who helped keep Rian alive.

“It is hard for me to get my head around that strangers are keeping my child alive … I urge everyone to make sure their families know they are organ donors as their decisions can be blocked at the last minute and little boys like my Rian need to know everything is in place,” Isabella said.

“Rian is a soldier and never complains.”

HOW TO REGISTER TO BE AN ORGAN DONOR

It only takes 60 seconds to save up to seven people, if you have your Medicare card.

1. Visit donatelife.gov.au

2. Click Register Today

3. Fill in your Medicare details, date of birth, postcode and email address

4. Select what prompted you to register, click Submit