Saving Jules - An NZ Adventure

On Saturday 6th March 2004, our oldest son Julian was diagnosed with a rare, chronic life-threatening heart/lung condition called Idiopathic Pulmonary Arterial Hypertension, at the young age of only 3 1/2.  On the 16th March 2004, he underwent a cardiac catheterisation to confirm the diagnosis.  Thanks to a few different medications, his health remained stable for a number of years, until 2011 when it started to decline and the decision was made to perform an 'atrial septostomy'.  It took a little while for him to 'come good', but his health has again remained stable since.

At Julian's last appointment at the Pulmonary Hypertension Clinic on June 25th 2015, just last week, we were hit with the unexpected bombshell by his cardiologist, who informed us that he will now have to go on an additional medication called 'Prostacyclin ', which will be administered by either a 'PICC line ' or a 'Hickman line '.  While Julian is looking forward to how much better this medication will make him feel within himself, the downside to this is how restrictive to a persons lifestyle the method of delivery of this medication is.   He did have 2 big dreams he has been wanting to fulfil for a while now, and unfortunately, once he goes on this medication, it will be extremely difficult for him to be able to do so.

Dream One:  Go on a road trip holiday through the South Island of New Zealand with his Dad

Dream Two: Swim with dolphins

Dream Two, we are able to fulfil ourselves.  His friend is going to be going in to hospital to be put on the same medication, and our families are going to send them both along together if we can, to share in something special before they are even more restricted.

Dream One, however, is why we need your help.   Originally, we were preparing for Julian and his Dad to travel around May of 2016, giving us plenty of time to save and plan for the trip.  Unfortunately, we no longer have the luxury of time.  We are setting up this GoFundMe page for his trip to New Zealand.  Once again, as we were preparing to save for this trip ourselves it would have been quite manageable within our original time frame of around a year.  However, as I am on a Carer's Pension for Julian, and my husband is on a Disability Pension, it is quite simply out of our means to do this in the extremely restricted time frame we now have.   Within this restricted time frame, one thing that we cannot ignore is the inflated cost of this adventure during peak holiday season, and unfortunately this is unavoidable if we're to make this happen before he goes in to hospital for the 2 1/2 week process of going on to this additional medication.

Our window of opportunity is becomingly increasingly narrow and we need to act as quickly as possible.  As it stands now, we have been told that Julian will be going on this medication between September and the end of December this year, after which, travel to New Zealand will become extremely restrictive as not only is this medication is not available over there, he will have a permanent electronic medication pump attached to him 24 hours a day, making it extremely difficult to enjoy any adventures that would risk infection or the line being knocked out.

Our efforts to approach a known children's charity was unsuccessful as he was granted a wish at the age of 7, and therefore he is no longer eligible for any further grants through them.

Pulmonary Arterial Hypertension is a rare disease where the blood pressure in the lungs is higher than normal. PAH happens when the blood vessels tighten, and over time this causes fibrosis (scars) of the vessel and higher pulmonary blood pressure. The Right Atrium and Right Ventricle chambers of the heart have difficulty pumping blood out to the pulmonary artery and through the lungs. There is a large amount of strain on the heart to overcome this high pressure and the constriction causes the heart to become enlarged and weakened. Eventually, the heart can no longer keep up with the demands placed on it by the body and can result in heart failure.

Idiopathic Pulmonary Arterial Hypertension is when pulmonary hypertension occurs without a known cause and is not the result of another medical condition. IPAH is extremely rare, occurring in approximately 2 – 10 people per million per year and although it affects men, women and children it is most common in women between the ages of 20 – 45 years of age.

Please help us send Julian on the adventure of his life.  Julian, my husband and I want to thank you all in advance for making this possible.