If you’ve followed me for any length of time you’ll know about baby Noah and his rough start to life, with 3 lifesaving operations and a 7-month stint in hospital which included a number of late-night callouts for me to go to the ICU to prepare for his demise.
I know from the many, many private messages of support, that Noah has inspired you with his undeniable joie the vivre as you watch him grow up right before your eyes at the markets and on social media. I’m hoping that you’ll extend this goodwill towards another little boy halfway across the world in a small town in the USA.
Noah had 2 open heart surgeries and a bowel surgery, but what came closest to killing him was a condition called Hydrops Fetalis. There’s no fixed cure for hydrops because the cause varies, and the mortality rate is 90% (supposedly 100% in Noah’s case because of his Down Syndrome – though clearly he’s proven the doctors wrong).
In the last couple of years, I’ve been a member of a Hydrops Fetalis parent support group on Facebook, and frankly, it’s tough to know what to say or do in response to some of the posts because I know the prognosis is poor.
Two days ago, a young woman posted to ask for suggestions on how she could save up money for the ongoing medical expenses for her hydrops survivor baby son, Wyatt.
Wyatt is still very sick and doctors have yet to figure out what’s wrong with him.
Wyatt’s parents work full-time but have had to travel at least once a month to see specialists, and their health insurance does not cover their expenses. They live in a tiny town of less than 3000 people, so their access to local charities is limited.
Wyatt’s dad sold their wedding ring set to fund their last trip.
They are due to travel again in about ten days, ie. on what is Australia’s Mother’s Day weekend.
Other parents have suggested that Wyatt’s mom tries to sell t-shirts, but with the little time between now and their next appointment, I thought I could maybe jump in to help in what little way I can.
You may know I’ve got a cookbook that I published a couple of years ago, called Jackie M’s Truly Malaysian Street Food At Home. I’ve still got a couple of hundred copies in my garage and I’m happy to donate sales between now and next weekend towards Wyatt’s medical expenses.
Can I ask you to consider buying a copy – I’m not keeping a cent for myself – the only amount I’ll be deducting personally will be the postage cost of the book. I think it’ll make a half-decent Mother’s Day present, and I’d be happy to sign it if you request it in your order.
The book is only AUD$15 plus delivery.
I also have a digital download copy for AUD$9.90.
The link to buy it is here >> http://www.jackiemshop.com.au/product/jackie-m-truly-malaysian-street-food-at-home-mini-cookbook
Here’s the link to a quick video I made >> http://bit.ly/help-wyatt
If you don’t care for my cookbook (whatevs :P) but would still like to support Wyatt, his mom has just set up a GoFundMe page where you can donate directly to the family >> https://www.gofundme.com/support-wyatt
I’ve taken the liberty of capturing some of the posts about Wyatt from when he was born, so you have an idea of what the parents have been going through. These are from the old Facebook page his parents set up >> https://www.facebook.com/Wyatts-wish-Hope-for-Hydrops-563760083798079
The latest updates are now on this new page >> https://www.facebook.com/wyattAngelino/
July 26, 2016
Prayer request needed. We are in route to Macon now chest X-ray confirmed our worst fears. The hydrops is back and worse than ever. Our fight continues we will never lose hope
July 26, 2016
Update Wyatt is in congestive heart failure they are running tests on him now
July 28, 2016
After more tests were ran we ruled out congestive heart failure but his liver is enlarged so more testing is required… We are waiting to get our date to go to Atlanta for the testing
August 22, 2016
Today is the big day X-ray in a few and then we meet the geneticist this afternoon. Hopefully we find answers so we can help little guy fight
September 9, 2016
We got a call from Atlanta today. The words were heartbreaking…. We need more blood…. So this means more needles more screams and still no answers. Wyatt has been in pain lately due to his liver we assume. As mommy I am highly frustrated with the fact we still don’t have answers but as a child of God I know He will take care of everything. Please keep our family in your prayers. We have a great support team and your prayers gives us more strength than ever.
October 6, 2016
Ok so I haven’t had the heart to post. This last trip to Atlanta we received a list of what they are looking for. We have it filtered down to a storage disease. So for sure its a storage disease. Now the question is which one? After talking with our genetic councilor, most of them are fatal. As of right now we are starting with 12. Out of those 12 7 are fatal in childhood…. 4 of them can be fatal but don’t always lead to death. 1 of them is not fatal but does cause blindness. As bad as I wanted answers I hope this last test doesn’t give them to us. Our little man isn’t so little. He is 3 1/2 months and is 17lb note when he was born he was 5lb15oz. I believe he is getting big and strong to fight a battle. Please pray for Wyatt.
February 1
Wyatt is being referred to a hepatologist in Atlanta his liver has increased in size again prayers please
I want to thank you in advance from the bottom of my heart, and PLEASE spread the word to family and friends who may be in a position to help.
Jackie M.
0425 797 718
(Originally sent as a newsletter to my mailing list.)