Helping Renee get to America

Renee was born with a hypothalamic hamartoma, a rare tumour of the hypothalamus, a region of the brain that regulates many of your body’s systems.

Due to this tumour, Renee has developed an ongoing range of health and learning issues. She has precocious puberty, cognitive decline, behavioural problems and most significantly uncontrolled epilepsy.

In 2013, when Renee was 7, she underwent major brain surgery at Starship Hospital to try and remove the tumour. After a 6-7 hour operation and another 3 days to wake up, some of the tumour was successfully removed but the major issues remained. Her recovery from this took its toll also, meaning two months in Auckland at Starship and the Wilson Rehabilitation Centre.

With over 10 medication options tried and with our neurologist and surgeon at Starship saying no more can be done, we investigated the options overseas. We were not going to give up.

Stereotactic Laser Ablation is done in Houston, Texas and with state of the art technology this advanced technique, is our last hope for Renee to have the quality of life we all so desperately seek. Renee will be the first person in NZ to have this surgery.

18 months ago an application was put into the Ministry of Health for funding for this treatment. Being that long ago we never in a million years believed they would fund it but amazingly, just before Christmas we found out that they had approved funding for Renees surgery and one adult to accompany her. We have finally received dates and have to be in Houston by February 27th, with surgery scheduled for March 10th.

Of course we were delighted with the funding and a date however we have to go as a family as Renee cannot be managed alone and Leon and Hollie are not covered. The funding also only covers two weeks away but with Renee’s history we have no idea what the outcome will be and how long we will be away as well as ongoing support for her when we return. As part of the surgery we will also have to return to Houston in a years’ time for a follow-up.

The risks associated with this procedure are immense but it also has excellent success rates. We enter very scary times but we will fight to give our daughter the best future possible.

Please help us to find the pot of gold at the end of the rainbow for Renee!!

Any donated funds that are not used will be donated to Ronald McDonald House, a place that has become a home away from home for us on this journey.