Miracle Harvey's Medical Fund
“For I know the plans I have for you,” declares the Lord, “Plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
They say there’s a story behind every person…but your mother’s story of you is where yours begins. Let me introduce you to my son Harvey. He was born on the 21st of September 2016, 3 months premature and a complete surprise. He was born with a long list of issues. However, at the time of discharge, his current complex needs are Respiratory support, Nasogastric feeding, Global developmental delay; Congenital hydrocephalus and Arthrogryposis multiplex congenital neurogenic type. Each diagnosis comes with its own symptoms and risks.
Harvey was no planned pregnancy; in fact, I am one of the many women who carry for 6 months without knowing. Harvey gave me no pregnancy signs like my teenage kids (Marcus 16yo & Jazmyn 14yo) did in the first trimester and I had regular menstrual cycles.
In general, my life was busy. I worked long hours, did family stuff, hung out with friends, organised and assisted with church events and I even went on a Volunteer trip to Fiji for 9 days. When I returned back to Sydney, no weight had shifted and I came to the conclusion that I was bloated.
After a self-diagnosis on Google, I read that some women mistake bloating for pregnancy. My curiosity drew me to the doctor’s door for blood tests. Lo and behold, the Dr says "Congratulations! You're pregnant and please book in for an ultrasound scan, Thanks."
It was exciting and nerve-racking news because a lady of my age, 41 yo with a Bicornuate Uterus now has higher chances of a miscarriage within the first 8 weeks of pregnancy. So, it was in our best interest that we kept this news on Lock Down.
An Unexpected Arrival
On Monday 19 September 2016, we arrive at Sydney Xray and my calculations had put me at 8 weeks pregnant; the ultrasound scans revealed that I was 6 months pregnant. Jonathan and I just laughed with tears of joy rolling down our cheeks. Our news was no longer on Lock Down.
The surprise continued, 2 days later I was in Emergency with stomach pains, only to discover that I was 8cm dilated. Harvey was coming out bottom first, ready or not. He was born on the 21st of September 2016 at 11.17am, was 33cm in length and weighed 910 grams. And so, our 8-month Hospital journey begins…
Having Harvey in NICU at the Royal Women’s Hospital for the first 120 days was an overwhelming experience. He endured 1 surgery, 3 blood transfusions, 2 platelet transfusions, picc lines, concoctions of liquid protein, ROP, Chronic Lung Disease, on Respiratory support, PDA, Reflux the list goes on. There was a lot of praying, watching and waiting beside his humidicrib. Harvey was notoriously known for his bradycardia’s, desaturations and sleep apnoea.
At Full term, he was then transferred to CICU, Sydney Children’s Hospital, where he spent the next 84 days of his life. It was by this stage that we were coming to terms with his situation. We almost lost him a couple of times and had to face the reality that he was still fragile; his survival rate was bleak and will have a future of complications. The lowest point came when the doctors told us to consider Quality of Life and to sign a Do Not Resuscitate form. Praise the Lord, we never saw that form.
With continued prayers and taking each day in our stride, I took a Leap of Faith and took Harvey off his ventilator during the day, where he learned to breathe on his own. Time off the ventilator started at 20 minutes, then 30 minutes then 1 hour. This was against all odds but it warranted him a discharge referral note into Christopher Robin General Ward where he continued to grow bigger and stronger. After 56 days in the ward, and a total of 260 days in the hospital, Harvey was finally discharged on Wednesday 7th of June 2017.
Where We Are Now
Harvey has been living at home with us now for just over a month. My days with Harvey now consist of hour long feedings every four hours, constant sterilising and cleaning, exercising and strengthening his limbs and assisting him with developing his fine motor skills. Harvey continues to see several specialists at Campbelltown Hospital and Sydney Children’s Hospital, Randwick. It's a big job, but one that is totally worth it as our lives has been enriched by him. So, it’s hard for me to return to work.
With only 1 income coming in, we’ve had to stop and re-evaluate our priorities. Harvey has come a long way in his short life; he is by no means out of the woods yet and is going to need long-term treatment. The main concern we have now is affording his extensive medical bills and expenses. We're not classed as permanent residents; therefore we are not eligible for government assistance. Thankfully, Enable NSW and Nutricia are helping cover the cost of his X2 Trilogy Respiratory BiPAP machines and Feeding Pump but his ongoing medical supplies costs, medication, hireage of his pram and appointments are not supplemented. Monthly costs will vary, for June it was $500.00.
We are in the process of applying for a Skilled Independent (subclass 189) visa which allows New Zealand citizens to obtain permanent residence status which came into effect on 1 July 2017. The application for a family of 5, medical check-ups, and lawyers' fees will cost us around $10,000.00.
With all of the above combined, we call for your prayers and for any help in the form of donation that may assist in easing our financial worries, and keep us going as we apply for residency.
Thank You for taking the time out to read Harvey’s story!
BOOM! AUSTRALIAN PERMANENT RESIDENT VISA GRANTED! THANK YOU JESUS!
I was doing my victory dance with Harvey but he looked at me like I was a weirdo. Ummm dude…what’s wrong with Level Up dance moves?
I can honestly say that this application was overwhelming and frustrating at times because of the never ending forms, procedures and paperwork involved. But you know what - WE DID IT!!! BOO YEAH!! THANK YOU JESUS!! NEXT!!
I updated my facebook profile picture to spread awareness about Arthrogryposis Multiplex Congenita (AMC) day on the 30th of June. In support of this day we wore Blue and underneath that, we were wearing Maroon. Lol.
Harvey’s AMC is non-genetic and unidentifiable. AMC is an umbrella diagnosis with over 400 types. There is no cure for AMC, just treatments. Thankfully, Home Affairs has granted us this visa and opened the National Disability Insurance Scheme (NDIS) doors to provide him with the support he needs. Whoop whoop!
And the flow of good news continues...It's official that Harvey no longer needs his ventilator.
Unbeknown to me that equipment supplied to us by Enable NSW are to be returned when we no longer require them or if the Dr tells them. So when they called to arrange for the 2 ventilators to be collected. I was like the happiest person ever. However, on the presumption that these ventilators belonged to Harvey, I donated one to Sydney Kids. Thankfully Enable NSW has an onsite Rep who can retrieve and return it on my behalf. Phew!!! Otherwise I'll be selling cupcakes for $10 each to pay for $20,000 Ventilator. Oops. Sorry about that.
Returning these ventilators is a blessing. If we decide to travel somewhere by plane, I don't need to get clearance for both Harvey and his ventilator from a Respiratory Team and the GP. In Harvey's world, this is a win win tick tick for us.
Then at a recent eye check, the Ophthalmologist checks Harvey's eyes and confirms that there is no sign of Papilledema which is swelling of the optic disc. Harvey has Hydrocephalus and it is vital that regular check ups are done. He then asks about Harvey's teary eyes. I told him that he has blocked tear ducts and was told that it should clear itself up. He in turn says, I can fix that and all I need is 10 mins. When is his next surgery under GA? I can tag along and unblock the blocked tear ducts. I gleefully said, surgery is next year and feel free to tag along because I'm the boss. lol. Before we left the room he sent an email to our paediatrician to put things into motion. Win win tick tick.
I can do all things through Christ who strengthens me - Philippians 4:13
From my family to you and yours, we would like to THANK YOU all your continued prayers, generosity, fellowship and financial blessings. Words cannot express our gratitude!
Have a blessed week and open happiness.
#timeforatriphome #lookingforsponsors #thankyoujesus #thankyouhomeaffairs #thankyoueveryone #godisgood #blueforAMC #soexcited #teamharvey #winwinticktick #levelup
So 3 weeks after our 193 page health waiver submission and 5 days after Marcus turned 18, I received an email from Home Affairs.
It reads: As Marcus is now over 18 years of age, information is required regarding dependency. Please see ‘Request Detail’ section.
As per their Request:
* I had fill out Form 47A - Details of child or other dependent family member aged 18 years or over
* Confirm that he is part of our ‘family unit’
* Provide evidence that he is wholly or substantially reliant on us
* To be considered eligible, he cannot be in a relationship
* Provide evidence of enrolment in course of study
* Provide evidence of his employment history, details of positions held, hours worked and wages paid
* Evidence of our contribution towards academic fees, accommodation and weekly living expenses
As frustrated as I was for receiving this request, I said a prayer and got the job done. I felt so relieved when I uploaded and submitted this file into my ImmiAccount. Whoo Hoo!! Thank you Jesus
This also means that Marcus’ fees will be at the Adult rate not the Child rate when I submitted our application last year June. Estimated remaining balance to pay 8K
And the waiting game continues...
Harvey’s medical assessment outcome was unfavourable and did not meet the health requirement set out in the Public Interest Criterion (PIC) 4007 (1)(c). A Health Waiver can only be exercised if the delegate is satisfied that the person satisfies all other criteria for the grant of the visa applied for, and that granting a visa would be unlikely to result in either “undue cost” to the Australian community or “undue prejudice” to the access to health care or community services of an Australian citizen or permanent resident.
To consider a health waiver, the delegate requires detailed information and document regarding you and your family’s ability to mitigate the potential costs and/or prejudice to access, potential contribution to the Australian community and any compelling and compassionate circumstance.
The likely cost to Australia is $1,757,000.00 for commonwealth disability services, state disability service, early intervention services and special education services.
The time frame for us to respond was 28 days to provide supporting documents to assist with their final decision. #nopressure
Believe me I was stressed! It was a long list to get through. However, I was reminded that our Amazing Father is in control and I began to put things in perspective. I made a plan and we attacked each item on the Home Affairs checklist.
On Tuesday 23 April 2019, I logged into my Immigration Account, prayed with my BFF Jonah and uploaded a 193 page response. 7 of those pages was our cover letter. I hope that our submission will help the delegate(s) come to a final decision.
If the reply is NO, then we continue with the treatments Harvey is currently receiving and be grateful with whatever we can get access to. We can also reapply under Jonah as the main applicant or wait for Harvey to turn 10 years old as he automatically becomes an Australian citizen. By then, Marcus and Jazmyn will be old enough to apply for their own visa.
The other option is to send our case to the Administrative Appeals Tribunal.
There is no deportation for us because Australia and NZ have had agreements in place since the 1920’s. In our situation the Trans-Tasman Travel agreement and the Reciprocal Health agreement (Medicare) covers us.
If the reply is YES, then I have the wonderful job of applying for the National Insurance Disability Scheme (NDIS). Oh no more forms!!! In a year’s time, we can apply for Australian Citizenship.
Massive shout out to everyone who helped us during this process and making the time to write support letters for us. Keep sending us your much needed prayers. THANK YOU SO MUCH!
The ipad video is of Harvey watching the Dave Ramsey Show. #buildingwealth #staydebtfree
WOW! The last time I posted here was in February 2018. Feel free to find me on Facebook.
So what’s been happening for the past 14 months? Well, Harvey is thriving developing at his own pace. He is now 2 years and 6 months. He makes a lot of sounds and his first word is Yeah. Lol. He loves ABC’s Cocomelon, Little Einstein’s and his favourite song is the Wheels on the Bus. He does enjoy these songs in other languages too - Spanish, French, German, Korean and Japanese. Some of his favourite movies are Big Hero 6, Coco, The Greatest Showman and Rio. Can you tell he loves music? In church, he cries when worship is over. And when that happens, it’s our cue to leave for the gallery room for the rest of the service.
Oh and I have to mention that he is a professional at using an iphone, ipad and a Samsung phone. He will swipe across until he sees the YouTube icon. Scroll up and down to look for favourites programs and songs.
We regularly attend 3 playgroups every fortnight - 2 out in the Eastern Suburbs and 1 in Blair Athol.
Hip Dysplasia - He’s had 2 hip surgeries. His first hip surgery required him to be in spica cast for 2 months. Harvey was no lightweight during that time. It felt like I was carrying a 16 kg kid around. #mrsmuscles. In March we will operate on his hips again. Operating on his feet will start when our surgeon is happy with his hips.
He’s tried out standing frames and had his feet casted for special supporting shoes. He’s in power chair training and needs to focus on direction.
Feeds - He got a PEG inserted and failed a Videofluroscopy swallow study. Not that I paid too much attention to the speech’s instruction of Nil by Mouth. I had painted on ears and I continued to feed him smaller quantities of food.
We are waiting for an available spot for another Videofluroscopy.
Sleep study - Positive results and he no longer needs respiratory support.
Appointments -Regular appointments with his therapists and paediatrician at Campbelltown Hospital (CTH) and 2-4 monthly appointments with his doctor’s at Sydney Children’s Hospital (SCH), Randwick.
Hydrocephalus - MRI of the brain showed a slight change of in size of his 3rd ventricle since his last MRI in Jan 2017. When Harvey is older, we will look at removing the Rickham’s reservoir. Eyes are of normal appearance and no swelling of the optic discs.
At home - While we wait for his next hip surgery, I will try to be like a home school teacher. I’m teaching him keyword sign language, encouraging him to sound out words, draw lines and circles, and support himself from a lying to a sitting position vice versa. Household chores will be on the curriculum too.
So that basically sums up our 14 months. Visa update to follow.
God Bless xx