Help Stella Orpwood's battle with rare immune condition
Justin and Tanya's daughter Stella was born with Severe Combined Immune Deficiency, meaning she has no immune system.
Canterbury
Justin Orpwood and Tanya Pryde welcomed their daughter Stella to the world on the 26th August 2018. Sadly Stella was born with a rare genetic condition called Severe Combined Immune Deficiency (SCID) which means Stella has no immune system. Only one or two babies are born a year in NZ with SCID. Stella is the first baby in NZ to have this condition picked up in the newborn screening heel prick tests. It's really lucky that it was picked up before Stella got sick.
The treatment for SCID is a bone marrow transplant which will be done at Starship Children's Hospital in Auckland when Stella is a few months old. Until then Justin and Tanya need to keep Stella safe and healthy at home in Christchurch and administer weekly antibiotics and antibodies to try and prevent her getting sick before the transplant.
We're hoping to raise some funds to take some stress off and help make it easier for the whole family to be at Stella's side over the many months she will be in isolation at Starship receiving chemotherapy and the transplant.
Amie Orpwood's involvement (page creator)
We were so excited to finally welcome little Stella into the world and its heartbreaking to see this amazing family having to prepare for this rough journey ahead.
Use of funds
The funds raised will be used to support the family while Stella is under going treatment.
Latest update
Stella happy growing toddler 15 December 2019
Merry Christmas to you and your family! We hope you have a wonderful holiday period spent with your loved ones.
It's hard not to reflect on where we were this time last year. Stella had received her transplant on the 12th December and about now, she was fighting for her life as she had a nasty infection.
This year we are are home, chasing around a very active, happy, strong-willed toddler. Counting down to our first family Christmas not in hospital.
Stella is doing very well medically. We still administer weekly injections of antibodies, this luckily gives her some protection against measles. Unfortunately with ongoing cases of measles in NZ and neighbouring countries we are unable to come off this injection and begin the next stage of her treatment plan just yet, but we will get there.
Stella is still tube fed, but has made some big leaps in learning how to eat recently.
Overall things are looking really positive at the moment and we are happily slowly introducing Stella to more people and experiences.
This week marks 50 years of the Newborn Metabolic Screening Program in New Zealand, Tanya attended an event at Parliament to celebrate the occasion. The Minister of Health gave a lovely speech and mentioned Stella.
We are so lucky to have had Stella's condition picked up early through this screening, especially as screening for SCID was only introduced December 2017 - less than a year before Stella was born.
The ministry of health commissioned this video to promote the success of newborn screening and it was an honour to share Stella's story and express how grateful we are.
There are more stories about people with other conditions they screen for and a cool video about how the lab does the testing at this link:
We wanted to thank you again for your generosity, having had time away from the chaos that was life in Starship we realise just how much we couldn't have got through without the financial support and kind words we received from yourself and others. So please take our most heartfelt thanks. Stay safe over the holidays.
Love Justin, Tanya and Stella
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