Cardiac Issues at Age 8

It's been a while since our last update. In that time Louie came down with the flu and it became too much for his little body. He started collapsing so I had to rush Louie to A&E and from there we were sent to Waikato Hospital. Louies heart rate had dropped down to 12 beats per minute with a respiratory rate of 10 breaths per minute. We're very slowly back onto the road to recovery. Louies back at school now part time. Unfortunately moat mornings he has to have a late start because he is still always just so exhausted. We're awaiting an appointment at starship up in Auckland and last week I had to pay almost $2,000 out of pocket to be seen by a private pediatric cardiologist due to lack of pediatric specialists at Waikato hospital, which as a single mother is no fun. While being back at school after so long off is a big achievement, he's still experiencing dizzy spells and extreme fatigue. As soon as he gets home from school, he goes straight to bed and has to spend weekends stuck in bed due to lack of energy with our only weekend outings being attending Equippers Church and Louie was finally able to join back in with the kids group this past Sunday. Equippers always lifts our spirits and have become a second family to us with all the continued prayers and emotional support they've provided us with. 

With less than a month until the end of term, we're aiming to get Louie back into his old routine of being able to attend school again full time. He's unfortunately had to miss a lot of school this year which has meant I've also had to miss a lot of work to care for him which obviously puts additional stress on us. 

How can you help? By spreading awarness of ehlers danlos/hypermobility spectrum disorder and the lack of resources in our public health system. Most of the attitude we've gotten from the public health system is "well that's just want it's like to live with HSD/EDS." Due to all the changes within our public health system, people with HSD/EDS like my son and I are considered a drain on resources and think it's acceptable to have a 8 year old suffer with joint pain, gastrointestinal issues, cardiac issues and mast cell activation issues because it's just part of the condition when in fact there are treatments available that could greatly improve both our qualities of life. I myself have been needing a double hip replacement for several years that would greatly extend my mobility or even prevent me from losing my mobility entirely. Instead, here in NZ, losing your mobility is just part of the condition so why waste public resources? Having gastroparesis/paralyzed stomach and unable to eat for years? It's just part of the condition and in their eyes an acceptable quality of life is being forced to be on TPN (IV nutrition), feeding tubes or liquid only diet on fortisip. Or go to Germany and pay $180,000 to have surgery to fix it. 

This is sadly the attitude of our public health system and the poor state of it. If we want help and improve our quality of life, we have to pay thousands out of pocket to be seen privately where we still get the bare minimum or we can pay hundreds of thousands to go abroad and greatly improve our quality of lives where they actually prevent people with EDS/HSD from deteriorating. Something we definitely can't afford. 

We're hoping to continue raising awareness on these issues so more resources can be made available for kiwis with connective tissue disorders so that our quality of lives can be greatly improved without having to go bankrupt to seek help abroad.