We are raising money to pay for Alex's medical costs for life saving surgery overseas
Hi Wonderful People,
We really didn’t want to have to do this but unfortunately Alex’s condition has gone to the next stage & currently there is no treatment in NZ. We need to go to Germany for a specialised surgery in order for him to live his life.
Alex is 16 and has been diagnosed with the genetic connective tissue disorder Ehlers Danlos Hyper-mobility which affects your entire body. joints, bones, soft tissues, blood vessels and internal organs. Alex’s condition has now deteriorated and includes Abdominal Vascular Compression Syndrome so he struggles to eat & drink, has chronic gastric pain, constant nausea, is starting to find it hard to walk or stand for long & suffers from regular migraines.
He is kind-hearted, has a great sense of humour, is an awesome big brother, loves cars & Formula One & is a great person to have on your quiz team as he knows a lot about random stuff (which is amazing as he hasn't been able to do regular school for the last 3 1/2 years).
When he turned 13 he started passing out, couldn't regulate his body temp, had chronic nerve pain, fatigue and severe brain fog. Alex was diagnosed with Postural Tachycardia (POTS) which affects the autonomic nervous system & the ability to pump blood around the body, giving you low blood pressure and a high heart rate.
Alex's joints started dislocating which triggered a range of new and on-going symptoms. He was eventually diagnosed with EDS and most complex cases like Alex end up having Vascular Compressions.
Everyone is doing it tough these days so any amount you can donate is greatly appreciated. By spreading the word about Alex’s page we gain awareness of these brutal health conditions that people are suffering from.
To others with this condition, you are brave, courageous, strong & resilient. You are all legends and always have hope.
I'm Alex's Mum - Jan and together with his dad Andy & his sister Hannah we created this page and from our family to you a massive thank you for all your help, kindness and generosity.
Any Funds raised will be used towards the cost of flights, accommodation, transport, specialised medical treatment, hospital stay and recovery rehab. Going by the others this is estimated at $140,000
Alex's Health Journey 3 December 2023
Firstly a massive thank you to everyone who purchased goodies from Downlights NZ. We really appreciate your support and we hope the recipients of these beautiful products enjoy them.
Latest update on Alex is that his neck keeps locking up due to his connective tissue disorder which means for him he can’t see properly out of his left eye & is in a migraine state until he gets a stabilising injection. If one joint going wasn’t enough, his shoulder decided to play havoc, so this needed an injection as well.
Unfortunately his weight hasn’t gone up in the last few weeks, so his NG Tube feeding plan has been adjusted a bit to hopefully put on more calories. On the upside, his last POTS blood pressure test was a great result and he managed to pass his NCEA English and Maths through Northern Health School - so lots to be thankful for.
Change needs to happen here in NZ, so we can find solutions for rare disorders, fund life saving drugs & do surgeries if options are available here so people don’t need to go overseas. Many heartfelt thanks to everybody who are trying to make this happen.
Take care and have a great week ahead.
Jan, Andy, Alex & Hannah x
Thanks so much for your wonderful donation supporting our son Alex, we really appreciate your kindness. Have a lovely weekend.
You guys all legends for doing a fundraiser and donating the earnings to help our son Alex. What amazing kids you are and I'm sure the teachers appreciated their clean cars. Alex loved his time at Remuera Intermediate, so this means a lot that you did this for him. Thanks so much - from Jan, Andy, Alex and Hannah