…which my ex-husband, Jonathan Crerar, learned when his life was turned on its head at the beginning of this year. My name is Rachel, and I am fundraising to support my ex-husband as he goes through a tough time. Less than a month after his 44th birthday while enjoying the Christmas and NY holidays, he suffered a lens dislocation of his left eye, which has resulted in permanent vision loss. With doctors telling him surgery needed to remove the lens is at least a year away, Jon is living with daily dizziness and headaches, requiring constant medication to control the pressure in his eye, all impacting him in a big way daily.

What caused Jon’s eye lens to dislocate? It turns out Jon has a connective tissue disorder, Marfan Syndrome. Marfan is a serious genetic condition that impacts the body’s connective tissue, which you might be surprised to learn, is everywhere! It is ultimately the ‘glue’ that holds the body together. Having Marfan puts him at risk of a number of serious problems potentially occurring at any time. Not just with his eyes, but his heart, blood vessels (especially the aorta), lungs, joints, and spine, just to name some. The most serious concern for someone living with Marfan is sudden aortic dissection.

Unfortunately, our family is not unfamiliar with Marfan after our young daughter, Kenzie, was diagnosed with it in 2021 while living with me in Australia. This did trigger testing of myself, and attempted testing for Jon, as 75% of the time, the gene defect is inherited.

Despite Jon’s attempt more than two years ago to find out if he had it, he was unfortunately let down by the NZ medical system, finding out only after his eye lens dislocated and losing his vision, that his test somehow was ‘lost’. With expedited new results finally received, it is now confirmed. With this diagnosis, comes the biggest challenge yet for Jon – a need to change his entire career!

As a self-employed solid plasterer and painter, Jon’s body is his ultimate tool for earning a living to support himself, and our young teen son living with him, Riley. Jon started work in his late teens as a painter and water-proofer. A dedicated tradesman, he developed his skills further in solid plastering, making the decision in his early thirties to go at it on his own. The work is hard, requiring strength and endurance. With the impacts that Marfan can have on the body worsening with age, Jon is lucky to have reached his age without having suffered more.

Marfan is a condition that is best diagnosed so that regular monitoring and testing can occur. But it isn’t just regular testing that is required, Marfan patients need to make major lifestyle adjustments – all to minimise the risk of lens dislocations or putting too much pressure on the blood vessels and causing a life-threatening aortic dissection. Heavy lifting is a big no!

This diagnosis means that despite him physically struggling with the impact of the lens dislocation, he can no longer just ride out the wait for his eye surgery and then just get back on with work as he has always known. If he wants the best chance of living a long and healthy life, he needs to make drastic life changes to protect his future and give up his physical job.

“But sometimes you have to let life turn you upside down, so you can learn to live the right side up”

A quote I found to attempt to put a more positive spin on all this change for Jon. It is positive that Jon has received his diagnosis, so that he can now take steps to protect his future. Unfortunately, though, the sudden nature of his lens dislocation, and the Marfan diagnosis, means his whole life has been flipped on its head. He can no longer work to support himself or our son in the only manner he has ever known. His diagnosis and loss of vision in only one eye though, also means he doesn’t meet criteria for disability support either. He is going through one of the toughest times of his life.

Despite recent attempts to keep Jon afloat, the wheels of the NZ government in providing any sort of support, are turning rather slowly. We are therefore reaching out to friends, family, and the public, in seek of financial support for Jon during this difficult time of transition and change.

Any help, no matter how big or small, will go a very long way to helping support Jon. But not just Jon - our son Riley too.

Riley has spent time living in both NZ and Australia, but as a true kiwi kid, would like to stay in NZ to finish high school in the Wellington suburb he grew up in. Without financial support, Riley’s ability to stay with his dad in NZ, or even just to be within close proximity of his school and friends, is under threat. Both his dad and I would love to be able to ensure we can support Riley in his choice of school and home.

Any money received from donations will go towards (in priority order):

• Ensuring ever growing debts can be paid to remove the stress of this major change so Jon and Riley do not have to move in with family, and our son can remain local to his school and friends

• Bridge the gap between Jon’s final pay from having to cease work, and payments via Government support until Jon can find new alternate work

• Any potential costs for training or courses that would assist in Jon finding alternate work options suitable to his health needs

• Costs to expedite through private pathways medical testing to diagnose any other potential Marfan related issues or risks

• Possible private pathway for the eye surgery Jon needs

We thank you sincerely for your consideration and any contributions.