Alexander's Future Fund

Since birth Alexander has had a modern rare immune condition called Eosinophilic Oesophagitis or EoE/EE for short. This means food has become his enemy. The white T cells that are meant to protect your body are attacking his. With little information or research into this new condition it has been trail & error to keep him healthy enough to attend school & take part in activities most of us take for granted. Unfortunately Alexander is at the most severe end of this condition.

He has been on & off food & relies on an amino acid formula (no proteins). The formula has increased his weight by 50% in the last 2 years, he remains small for his age. He remembers how good food can taste & is quite the gastronomic. When on water only one of his favourite things to do is watch Jamie Oliver & imitate him. Very rarely is he upset by these restrictions & will often create dishes with minimal ingredients. What we might consider rabbit food, he thinks it's a banquet.

He does without birthday cake, overnight stays with friends, play dates or general rough & tumble. Spontaneity is out as is most travel. However he is the most polite, happy, humorous chap you could meet. And talk...

We hope that Alexander will be able to find enough safe food to sustain life without tube feeding, be in less pain, maybe have a relationship & have the opportunities many of us take for granted. For this we need remission & to stay in remission, so far this has only been achieved once for 5 months in a 10 year period.

After 20 years working before children, mum now stays close to home covering feeding days at school, school trips & sick days. Dad works really hard to support the family & they are outside criteria for any assistance. Alexander's condition doesn't fit any 'box' & over the years they have fallen through many gaps in the health system. All funds have gone, including superannuation savings & debt increased with the many years supporting him, extra health/medical expenses & earthquake rentals while waiting to build a new home away from the old red zone in Heathcote Valley. They had hoped to downsize with the move to get on top of things but the insurance arrangement required house & land full amount. Six moves later they moved into their new home & West Melton community in November 2013. Taking a family vote to move again it was a resounding 3:1 against, enough was enough. Chronic fatigue has hit as has worry.

The main centre for research & treatment is in Cincinnati, USA. The family spend many hours looking up the latest research for condition updates & treatment options. In fact they support many others overseas who have the same condition. There are no support groups in NZ or established statistics, they are at the beginning.

Their main aim has always been his quality of life. This includes being able to go to school, play with friends, get access to medical care, have a break, have parents who are less stressed & can be parents rather than nurse or teacher. They are a very independent family who has always & continues to contribute to the community but have now realised they need some help to help Alexander. (The figure above is to complete registration but would make a dent & provide much needed relief, donations go into a society account especially for Alexander requiring 2 signatures, one independent). Please view the activity page for more updates.