It’s safe to say being a mum is one of, if not THE most challenging yet rewarding jobs in the world. Julie Malloy can certainly agree with that, and then some. Julie is a busy mama to three children with her eldest child Kobe being fully dependent on someone to help him with everything in every day to day life. On top of that her youngest son Hudson has also been diagnosed the same degenerative condition.
We recently chatted to Julie to learn more about her story, the daily challenges she faces as a mama and we have to say it really did make us stop and reflect on our own lives and the trivial things we often get upset over.
MLTS – Thanks so much for chatting with us Julie, we know you’re one super busy mama! Let’s start by you telling us a little about your family.
Julie – So a little bit about us. There is Bevan (40) Kobe’s dad, me, Julie (39), Kobe who has just turned 12 (nearly a teenager he keeps reminding me lol), Jazmine (8), Kobe’s sister and Hudson (5), Kobe’s little brother. We have two dogs, a cat and two horses. We love getting outdoors, bike riding, checking out different places down the Peninsula and day trips to the city.
MLTS – We first came across your family and your story on Facebook when we saw the page “Caring for Kobe” – can you tell us a little about Kobe and his special needs?
Julie – Kobe is just the most beautiful, caring little soul. He’s so easy going and nothing too much seems to get to him. He loves watching his sport especially his beloved bulldogs. He tells me when he grows up he’s going to become a bulldogs coach, lol. He participates in Riding for the Disabled every Saturday which he loves and rides a horse called Edwina. He also loves reading, he always has a book in his hand. He also want me to find wheelchair basketball for him.
Kobe was born with two gene mutations as Bevan and I carry the same bad gene which passed onto Kobe and his younger brother Hudson. We recently got a diagnosis of CMT fig 4 which is Charcot Marie Tooth Disease. There is a lot of people out there with CMT but not type 4, in fact it is so rare that no one has been reported with type 4 in medical history! Kobe also has Cerebral Palsy so the poor bugger copped a double whammy. Due to this, Kobe is unable to walk unsupported and is in a wheelchair for long distances. He does go to a mainstream school though with the assistance of full time aides and is in his walking frame during the days.
No one can tell us what the outcome will be or what to expect with both the boys as it is a degenerative disease and as time goes on they will get worse. Kobe can communicate but you do need to listen as his speech isn’t 100% clear. Kobe does a lot of therapy each week to maintain what he has and hopefully doesn’t regress too quickly.
So at the moment he does mini intensive therapy which is one week every month of strength work including five days a week for three hours a day. In between this he does fortnightly speech therapy, two and a half hours of physio and one hour of OT per week. Plus any other activities we as a family can fit in.
MLTS – That’s an intense schedule for a 12 year old boy! What a little champion fitting all of that in! So tell us about a day in the life of Kobe, what does that look like for him?
Julie – So a day in the life of Kobes consist’s of him waking up & yelling out to me to get him out of bed! From there I’ll put him on the toilet then get him dressed, fed, brush his teeth and hair to be ready for school. I then drop him off to school where he is with his aides and his friends. At 3.30pm I’ll pick him up from school and four out of the five days of the week he is involved in some therapy so it’s then time to take him where he needs to be.
Once therapy is done we come home and Kobes will relax for a bit while I get dinner ready, then it’s dinner, shower get ready for bed and then finally, bed. Most days are full on with not much time to just unwind and relax. Kobe is fully dependent on someone to help him with everything in every day to day life. It’s really like having a newborn 24/7 but with two other children and a family to look after.
MLTS – You’re a shining example of unconditional love and dedication, Julie. And as you mentioned, you have two other children to look after too! Kobe is your eldest child, when you first found out you would have a child with special needs, what did you fear the most?
Julie – We didn’t know anything was wrong with Kobe until about the age of nine months when he just wasn’t meeting the right milestones of a typical child. We were absolutely devastated to find out that there was something wrong with our son and then to be told so many different things at such an early age was just heart breaking.
We were originally told he would never walk, talk or be independent but so far he is proving everyone wrong. Don’t get me wrong he has a lot of struggles along the way but at the moment he is doing really well. He’s such a big brave tough boy.
I think the thing I feared most is the unknown and still really do. My biggest fear is what do we do when he gets to big to lift or carry or when we pass, who is going to take care of him? All the time we are around I know he’ll be fine because he’ll always be my first born, with the most incredible soul.
Julie – Yes it is definitely financially straining on us as a family especially when we have the two boys with the same condition. So it’s double the appointments, double the costs etc… and the only help we get from the government is a carers allowance of $115 per child per fortnight which doesn’t even cover the cost of a physio appointment which is $180 per hour!
There is a lot of pressure on my husband to have a good job and preform well as I can not work with all of the appointments I have to attend and if I’m not attending appointments I’m running around chasing up things for the boys. For example, a one week intensive therasuit costs $2000 per week, physio is $180 per hour, speech is $90 per half hour per fortnight, OT is $145 per hour plus his RDA horse riding on a Saturday plus I should be getting him in the pool weekly but it’s finding the time to fit it all in! Not to mention all of the equipment Kobe needs as well. Which is thousands… it really is never ending.
MLTS – Can not even fathom how you mentally prepare yourself for all of those costs and coordinate all of his appointments! We struggle just remembering the girls dancing times each week! You really are a well oiled machine Julie! And you share Kobe’s journey with your family and friends, tell us about your Facebook page, Caring for Kobe.
Julie – So the “ Caring for Kobe” started back in 2015 when we needed a new walker for Kobe. So one of my girlfriends who I went to high school with and later reconnected with, (our kids now go to the same primary school) contacted me and said I want to do a fundraiser for Kobe to help with the expenses and new walker. So she organised an awesome carnival/market day at Kobes primary school with stall holder’s and lots of activities for the kids to enjoy.
It was amazing and we got enough to buy his walker which was just over $3500! From then on I have updated Kobe’s progress from therapy to surgery and also fun things for those that want to follow his journey. The support and wishes from everyone has really been amazing. It also has Kobe’s fundraising bank account details on there if people want to help out with therapy or equipment costs.
MLTS – What a gorgeous friend to organise that for you. We are sure having the love and support from your family and friends has helped you get through some tough days. Being a busy mama of three gorgeous kiddies, what do you love most about being a Mum?
Julie – The thing I love most about being a mum to my three gorgeous kiddies is seeing them all out and about, healthy and smiling. My daughter Jazmine has such a special bond with the boys but more so Kobe, they are just beautiful together. I love seeing them play together and are always hugging. Life can be pretty mean and tough but when you see your kids happy and smiling it seems to disappear into the background for a spilt second…
MLTS – So you have three children, a plethora of appointments to keep, the school run to do, a house to run and all of the above times one million (well, we’re sure that’s how it must feel!), what’s something you like to do when you have a spare moment of “me time”?
Julie – Me time??? What’s that?? Lol! I don’t get a lot of time at all to myself but when I do I love going to see my horses and just hanging out with them. I don’t even have to talk to them. I also try and go to the gym three times a week and I have a great group of four of us that always train together at 5.30am which keeps me going to stay strong to look after the boys.
MLTS – We totally get it, horses and gym sounds like bliss to us (although not sure we could be as consistent with a 5:30am start!) You’ve grown up in Frankston and the Mornington Peninsula, what’s your favourite place to take the kids on the weekend?
Julie – I don’t think we have a favourite. When it’s nice weather we love going for drives and finding nice accessible places to have a milkshake (or wine!). We do love looking around the maze at Red Hill and heading up Arthur’s Seat. The kids love the beach so we try find somewhere close by to park that’s easy to take Kobe’s down to.
Thanks so much for the chat Julie. It’s been really heartwarming and insightful for us to learn about Kobe, you really are such a loving and dedicated mama and should be super proud of your amazing little family.
To find out more about Kobe and to follow his journey visit
‘Caring for Kobe’ – www.facebook.com/Caring-For-Kobe-116907675309406/
If you wish to help the Malloy family, they have set up a bank account for Kobe to assist with his therapy, equipment and special needs.
BSB: 063 539
ACC: 105 031 53