I would like to tell you about some friends of mine – Cindy & Craig. They have a sick little boy. Actually they have three cute little boys and when I say little I mean little – they are 3, 2 & Tommy is nearly 7 months. This is Tommy, he was born with an extremely rare disease called HPP.
I am not even going to try and spell it out in full and I think I would lose you if I tried. I can’t pronounce it let alone get my head around what it all means. I will try to explain it to you though… basically HPP is all about soft bones and his body not producing an enzyme which makes the bones hard.
Tommy is only the 3rd diagnosed case of HPP in Australia. Up until recently it had no known treatment and life expectancy was not good.
Lets go back to the beginning though.
I met Cindy when I first came up to the NT in 2001. We were both Governesses and have been friends ever since. Another friend used to joke around and called her “Cindy-Lou hoo hooooooo” and it kind of stuck. But then we found out her middle name really was Louise so her name really was Cindy-Lou and that is what she has been known as ever since. Cindy-Lou.
Here is Cindy-Lou and Craig with their gorgeous family…
See, I told you those boys were little. Cindy-Lou has now been down in Brisbane with Tommy since 27th February. Craig, James & William are still up on Devoncourt Station, near Cloncurry, where they live and work. Cloncurry is in North West Queensland about an hour East of Mt Isa. It must be heartbreaking and so hard to be away from these little fella’s and I can only imagine how much they miss their Mum. They have had to hire a Nanny to help with the little boys back home.
You see Cloncurry is a long way from Brisbane. At least a 2 day drive. Flights are expensive for 1 person let alone 3 which makes it very hard, finically, to travel down and back all the time. Add to that the high medical costs as well as a Nanny and BAM …. well I can’t even imagine how difficult it must be, makes me feel sick really.
Tommy is a little miracle baby. When Cindy-Lou was 32 weeks they were told he had a rare disease (not the one he was eventually diagnosed with – this first one was a terrible misdiagnoses) and only a 2% chance of survival. So they had to prepare themselves for the worst: they wouldn’t be taking a baby home.
Against all odds Tommy was born alive and kicking on 23rd December 2015 at The Royal Brisbane & Women’s Hospital. He had short bones, a slightly larger head and a very small chest. After about 5 weeks in NICU & the Special Care Nursery Thomas and Cindy-Lou flew home to Devoncourt Station on the 15th January. They were told he would just need regular check ups and some castings on his feet to correct slight talipes.
On the 14th February Cindy took little Tommy up to Mt Isa hospital with respiratory distress. Just thought he had a cold. He spent 12 days in hospital up there however was then taken down to Lady Cilento Children’s Hospital in Brisbane on the Care Flight Leer Jet – talk about travelling in style, that’s the way Tommy, only the best for you my friend.
Now look, I could honestly go on and on about Tommy and what has gone down in his short life but the bottom line of this story is this: we need to help this family. They live so far from Brisbane which means at the moment those 2 older (but very little) boys hardly ever get to see their Mum. They are not just a 5 hour drive away, or even a 12 hour drive away. They are a 2 day drive away or, like I said, an expensive flight. Cindy is living in Brisbane and I suppose spends her days by Tommy’s side in hospital. I am sure many of you out there can imagine what she is going through but to be honest, I can’t – because I have not had to deal with anything like this.
A good friend of the family – Krystal – has started up a support fund – The Thomas Walsh Support Network. This is a Facebook page where you can offer your support and follow Tommy’s journey. We are raising funds for the family to help them in any way possible.
The ABC Amateur Race Club raised over $17,000.00 at the annual Brunette Races in June. Can you believe it. Aren’t people just so bloody generous and amazing. It brings a tear to my eye just thinking about how supportive our community is up here.
Krystal has organised a Facebook Sale which will be held this Saturday – 16th July. We would love it if you could spread the world and support this wonderful family in any way. There are some great items up for sale, head on over and have a look, you won’t be sorry.
If you would simply like to donate money, any amount would be very much appreciated…
Via Millmerran Lions Club
Account Name: Thomas Walsh Fundraising Account
Account Number: 781508260
If you live in Brisbane and ever find yourself heading past Lady Cilento Hospital, Tommy is in PICU (not even sure what that stands for but that is where he is), please call in and give Cindy-Lou a hug from me. Tell her Miss Chardy sent you. I can’t imagine how lonely it must get being down there without your family by your side. So far from home. Take her a coffee, or perhaps you could offer her something from your business… maybe you know a beautician that could provide a relaxing facial, or maybe you know a friend who could offer support.
Lets all band together and help this beautiful family, even the smallest gesture would put a smile on Cindy-Lou’s face.
Please help my friend because we are all too far away to give her a hug.
Cindy is currently living in Brisbane, while Craig, William and James are back in Cloncurry at Devoncourt Station. Without the support of close family and friends this journey would be a much more difficult one. No one knows the outcome or length of Tommy’s journey. Sending you big hugs Cindy, Craig, William, James and of course Tommy! xxx
Hang in there!
I am sure Cindy & Craig would love to hear from you, please say hello in the comments below.
Do you live in Brisbane? Ever going past Lady Cilento?
Can you help my friend?