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…
Bank Details
Via Millmerran Lions Club
Account Name: Thomas Walsh Fundraising Account
BSB: 084-818
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?
Bloody hell Miss Chardy! I’m blubbing on the train! Runny mascara is such a good look. Lucky there’s a hideous wind around so I can blame that. I’ve shared your post, i cannot imagine what those poor buggers are going through.
Oh Judy… sorry!!! You could imagine, especially the distance. Have a good day. Thanks for sharing. 🙂
My gosh what a strong amazing family! thank you for sharing this story. just made a donation and used Misschardy as the ref. I can not even begin to imagine what they are going through, thoughts and prayers are with them all. x
Thanks so much for helping Jess, very much appreciated. 🙂
That is just awful. Why is life so unfair sometimes and to the nicest people. Sending your friends lots of love. xoxo
Yes, to the nicest people, you are right there. They have done so much for everyone else in the past so it is so great that we can all help them… even complete strangers. Thanks for your support and for thinking of them. 🙂
THis hit me right in the feels. I made a donation for this gorgeous family and I hope this post of yours goes viral so this family is inundated by a village to make their lives a bit brighter in their darkest days. Sending so much love. x
Oh gosh, you are all making me cry, I just can’t believe how kind everyone is. Seriously…. I knew there was a great community out there but sheesh…. you guys are amazing. Thanks so much Han, it is just so lovely of you to help. Thanks! 🙂
Chardy, thanks for sharing, it’s great that you are supporting your friend and her family in dire need. Hopefully Angelflight have been contacted to help with transport to the city when checkups are neccessary. Not an emergency service , volunteers , pilots and ground support. Also fun reading your blog, what a great job you are doing on the station and the kids have a fun energetic Mum. Cheers Helen
Hi Helen, will tell Cindy about Angel Flight. 🙂
It is so heart-wrenching when your baby is ill. Sending Cindy-Lou, Craig, William, James and Tommy lots of hugs and cuddles. Praying for you that everything improves and Tommy can soon go home and you can all be together and have great big fat group hugs.xxxxx
Thanks so much… lets hope and pray that they can be together soon. Looks like it will be some months yet.
What a small world, I met Cindy at the RBWH NICU in December when our baby Harry was there (he was prem but thankfully for us no other complications), I met Cindy when we were both expressing and had a little chat, baby Thomas was just brand new. I wish them all the very best and know its a hard road, we were far from home (not as far as Cindy tho!) for quite a while too and its a hard road, they are all in our thoughts
Such a small world Aleisha. So glad Harry is ok (great name by the way!!). Thanks for saying hello here, great to hear from you.
Maybe you could start a go fund me page Miss Chardy, they deserve a break!
Thanks Jan, they did look into that, think it was easier to set up through Lions Club… thanks so much for the suggestion.
I am in Brisbane Miss Chardy and I can help Cindy, I’ll aim to get in and see her next week!
Thanks so much Karen!!! Give her a hug from me.
Hi!
PICU (Paediatric Intensive Care Unit)😊
I feel very much for that beautiful family. Wished I read this a few days ago….spent 2 days at Lady Cilento with my sons checkups. We spent 6 months there, never allowed home (4 hours away). I would dearly have loved to have called and bought her a coffee or sat with him so she could walk outside for 5 minutes.
Have you heard of Breaking Down the Barriers for Rural Patients? They may be an organisation that could help too.
I will share this. Most of my cohorts there are cancer families, but I will spread the word. Sending good thoughts their way, Miss Chardy💜
Hi Lyn, gosh it is just such a small world isn’t it… I knew there would be so many people out there who have been in the same boat as Cindy. Other people have suggested the Breaking Down the Barriers for Rural Patients too, so I am sure she is onto that one. Thanks for sharing and thanks for the message. How is your son now? 6 months in hospital… I can’t even imagine.
I would love to help if I can. I live in northern NSW. What can I do?
Hi Barbara, they are having the Facebook sale at the moment if there is anything you see there that you might like to buy or you can donate through the Millmerran Lions Club or you can just send Cindy Lou a message here and I am sure she would be grateful to hear from you.