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MORE ABOUT JAKE & JOSH

  • At the 19 week ultrasound I discovered my sons had Twin to Twin Transfusion Syndrome and twin 1, a week later named Jake Alfred Grant, had a cleft of the lip (and probably palate). Twin 2, named Josh Andrew Lance, didn't have adequate blood flow via the placenta, meaning he was living in a toxic environment.

 

  • Josh's cleft of the lip and palate was discovered at another ultrasound at 21 weeks.

 

  • Jake and Josh were born at 29 weeks plus 2 days gestation on 11 June 1997, weighing 1460 gms and Josh 665 gms respectively.

 

  • Both had complete bilateral clefts of the lip and palate, making them only the 2nd set of identical twins on record at that time, in Australia, with that severity of cleft. 

 

  • We have attended an appointment or one of the boys has had surgery or a procedure, at PMH or other places, an average of once per week since they were 1.

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Jake

  • Left Princess Margaret Hospital (PMH) at 7 weeks of age.

  • Has had at least a dozen surgeries and numerous procedures, the last being orthognathic surgery on 13 September 2017.

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Josh

  • First came home when he was 5 months and 1 week old , weighing just under 3 kgs, having had 3 x bowel surgeries, 1 x eye surgery and 1 x other (boy related) surgery.

  • Returned to PMH on Boxing Day and remained more in hospital than out until he was 13 months of age. A total of 289 days of his first 365 were spent as an inpatient at PMH.

  • Needed oxygen 24/7 until 21 months of age and BiPAP until 26 months of age.

  • Has had at least 2 General Anaesthetics, for either surgery or procedures (botox mostly), for his entire life.

On 11 June 1997 my sons came into this world, having spent the previous 10 weeks fighting for life.  20 years later we find ourselves in a situation of fighting for the roof over our head, so I have created this website as a way of sharing our story, whilst asking for urgent financial support.  Yes, this is a kind of "crowd funding", except in this case it will be raised directly through The Josh Stephen Protective Trust, with 100% of donations going towards our goal of reducing the remaining loan on our home. 

I live by the motto "you don't ask, you don't get", so in essence I am asking for 100,000 individuals to donate one buck each, raising $100K that will be used to reduce the mortgage on our home to an amount we can afford to service.  At the same time, I will be endeavouring to build a long term network of buddies for Josh, who lives with significant disability and additional medical needs.  Everyone knows the saying “It takes a village to raise a child”, right?  Well, when it comes to someone with significant disability and/or medical needs, it often takes a lot more people to support that person for their entire life.  As Josh's Mum, I would love to be able to provide ALL of the resources Josh requires to live a full life, but at the moment I don't have the means, so hopefully this is how I am going to make that happen.​

This website and the information provided is not to emote pity - because we don't need that - but is the quickest and easiest way I could think of  to give potential supporters an overview of how we came to be in our current situation.  I would particularly like readers to consider the amount of time it has taken to simply care for my beautiful boys over the past 2 decades and the impact that has had on my ability to secure ongoing paid work. 

 

Having said that, I think it is important to know I have worked, in paid and volunteer roles, the majority of my sons' lives, but unfortunately it's never been enough to cover all of (mostly) Josh's needs.  In the past we have received wonderful support from Variety WA and even some funds from State and Federal Government programs, but now Josh is an adult that type of support is very hard to come by. 

 

Another of my favourite sayings is "I'm not complaining, just explaining" and that is what I am attempting to do here.  If what I have written so far resonates with you, please head over to What Next? for more information on how you can support us. 

 

In the near future I look forward to sharing more information about my sons' interests and achievements and also more detail about some of the things they have endured, so our supporters have a better understanding of their truly unique lives.  I may be biased, but from where I sit I have 2 of the most remarkable, resilient and courageous children to have walked this earth, so I can't WAIT to tell our supporters all about them.

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